I need YOUR help!

OK guys, We need help!

There are two bills in Congress right now...

HR 653 - To amend title IV of the Public Health Service Act to create
a National Childhood Brain Tumor Prevention Network to provide grants
and coordinate research with respect to the causes of and risk factors
associated with childhood brain tumors, and for other purposes.

and

S 305 - A bill to amend title IV of the Public Health Service Act to
create a National Childhood Brain Tumor Prevention Network to provide
grants and coordinate research with respect to the causes of and risk
factors associated with childhood brain tumors, and for other
purposes.

Yes, you read that right, they are completely identical. The bills go hand in hand, but must be passed by the senate and house seperately before thay can be passed into law.

Lets get this done!

So what do you need to do?

#1. Contact your Congressional Representative and Senator in Washington D.C., representing your district, and ask them to support these bills and vote in favor of them.

You will need you full 9-digit zipcode, which can be found here

To find out who your Congressional House of Representatives Member and Senator are, visit this site.


#2. Contact your State Representative and State Senator (at your state Capitol) and ask them to file or support a joint resolution urging Congress to pass these bills. Remeber, you are asking for a "joint resolution".

OK, to find out who this is will be a little trickier. You will have to google "your state" general assembly. You may see a button that says "Who represents me?"

I have done the work for the top-five states that visit this blog. They are:

North Carolina

Vermont

Florida

New Jersey

Georgia

The best way to contact them is through e-mail. PLEASE, pretty please, and cherries on top, take a couple of minutes out of your day to do this.


Go ahead and take a look at the bills that we NEED to get passed:

House Bill 653

Senate Bill 305


#3. Ask your friends, family, helper network, medical professionals, church, community, school, teachers, and anyone else you can think of to do the same. You can copy and Paste this, and send it to everyone in your e-mail address books. The more noise, the better. In legislative affairs, it is very true that the squeaky wheel gets the grease, so to speak.

#4. If Congress passes these bills, and if your state passes a joint resolution, make sure to thank your Representatives and Senators.

To track it, you can go here

At the end of this post, I am going to include a couple of sample letters, the first is for your Congressional representatives in Washington, and the second is for your State representatives. They are just a little different. YOU DO NOT NEED TO USE THESE. But, you can if you want to, just make sure to add personal details.

Please customize your letter. Form letters that all say the same thing are extremely ineffective. But if you follow a general format, include personal testimony and clinical statistics, and “ask” for a specific action, your e-mail or faxed letter will be VERY, VERY impactful.

Hey YOU! Reading this right now, I am asking YOU to take action.





LETTER TO CONGRESSIONAL REPRESENTATIVE AND SENATOR
Your Name
Your Address
City, State, Zip

Today’s Date

Representative/Senator Jones
VIA E-MAIL/FAX (as applicable)

Dear Representative __________(last name) or
Dear Senator ________________(last name):

I am writing today to urge you to co-sign and pass companion bills HR 653 and S 305, which creates the “National Childhood Brain Tumor Prevention Network Act of 2009.” This vital legislation amends a portion of the Public Health Service Act and provides grants and coordinates research with respect to the causes and risk factors associated with childhood brain tumors.

As the proposed legislation cites, tumors kill more children than any other disease, and brain tumors are the second most common type of cancer in children. Childhood brain tumors are the leading cause of death from solid tumors in children. There are newly recognized types of brain tumors, as defined by the World Health Organization, and many of these newly recognized types occur in children. The causes of the overwhelming majority of childhood brain tumors are unknown. Brain tumors have substantial costs for affected children, the families of such children, and society. Childhood brain tumors cause significant morbidity and the loss of many years of potential life. The prognosis for most childhood brain tumors is dismal and survivors face lasting adverse health effects. Because of the relatively low overall incidence of childhood brain tumors, such tumors frequently do not receive sufficient attention and research funding.

No single institution has a sufficient number of patients to independently conduct research that will adequately address the causes of childhood brain tumors. There has been no comprehensive study analyzing all relevant clinical, biological, and epidemiological aspects of childhood brain tumors to identify potential risk factors and determine the cause of such tumors. Existing national cooperative clinical oncology groups primarily investigate treatment options and prognosis and do not typically examine the origins of childhood brain tumors or the risk factors associated with such tumors. A significant majority of children with brain tumors are first treated by neurosurgeons and not by oncologists typically involved in such groups.

[INSERT HERE, IN YOUR OWN WORDS, YOUR PERSONAL EXPERIENCE WITH A PEDIATRIC BRAIN TUMOR.]

Thank you for your leadership in the House (or Senate as applicable) and your consideration of this request. I would appreciate it if you would advise me of your actions on this extremely important and groundbreaking issue. My e-mail address is _________________. I look forward to hearing from you soon. (include your phone number if you wish.)

Sincerely,

your name
your address

LETTER TO STATE REPRESENTATIVE AND SENATOR

Your Name
Your Address
City, State, Zip

Today’s Date

Representative/Senator Jones
VIA E-MAIL/FAX (as applicable)

Dear Representative __________(last name) or
Dear Senator ________________(last name):

I am writing today to urge you to sponsor a joint resolution in the state assembly urging Congress to pass HR 653 and S 305, which creates the “National Childhood Brain Tumor Prevention Network Act of 2009.” This vital legislation amends a portion of the Public Health Service Act and provides grants and coordinates research with respect to the causes and risk factors associated with childhood brain tumors.

As the proposed legislation cites, tumors kill more children than any other disease, and brain tumors are the second most common type of cancer in children. Childhood brain tumors are the leading cause of death from solid tumors in children. There are newly recognized types of brain tumors, as defined by the World Health Organization, and many of these newly recognized types occur in children. The causes of the overwhelming majority of childhood brain tumors are unknown. Brain tumors have substantial costs for affected children, the families of such children, and society. Childhood brain tumors cause significant morbidity and the loss of many years of potential life. The prognosis for most childhood brain tumors is dismal and survivors face lasting adverse health effects. Because of the relatively low overall incidence of childhood brain tumors, such tumors frequently do not receive sufficient attention and research funding.

No single institution has a sufficient number of patients to independently conduct research that will adequately address the causes of childhood brain tumors. There has been no comprehensive study analyzing all relevant clinical, biological, and epidemiological aspects of childhood brain tumors to identify potential risk factors and determine the cause of such tumors. Existing national cooperative clinical oncology groups primarily investigate treatment options and prognosis and do not typically examine the origins of childhood brain tumors or the risk factors associated with such tumors. A significant majority of children with brain tumors are first treated by neurosurgeons and not by oncologists typically involved in such groups.

[INSERT HERE, IN YOUR OWN WORDS, YOUR PERSONAL EXPERIENCE WITH A PEDIATRIC BRAIN TUMOR.]

Thank you for your leadership in the House (or Senate as applicable) and your consideration of this request. I would appreciate it if you would advise me of your actions on this extremely important and groundbreaking issue. My e-mail address is _________________. I look forward to hearing from you soon. (Include your phone number if you wish.)

Sincerely,

your name
your address

Hooray!!!

Everything looks great!!! I am so happy. The tumor has actually gone DOWN since the last MRI, meaning the radiation is still working. YYYYEEEEAAAAAHHHHH!!!!! I will post exact size measurements when Rick gets home with the paperwork. The Dr. says that the dizziness was probably caused by the tumor changing (shrinking). I guess that the attitude was simply 11 year-old-boy!!! Totally normal, but at least now we can feel more comfortable disciplining. lol. He doesn't even want to see us again for another MRI until Jan. unless Andrew shows symptoms. PHEW! Rick says he feels like 600 lbs. was lifted off of his chest, and I feel the same. Now to get ready for our camping trip...

I'm Scared

Rick and Andrew just left without me, because I decided to stay home and clean and pack for our camping trip this weekend. Now I'm really scared and sad because what if they get bad news without me. And is camping gonna matter if they find out tomorrow that Andrew has to start chemo? Of course not. Great. Now I'm crying.

Let them teach eachother

Hey All!!! We go up to Durham this evening. Andrew has a MRI early tom. morning, and then an appointment for us to get the results. We are praying that everything is OK. It's so difficult with his tumor to know what is normal and what isn't. He has had more of an "attitude", but is it from the tumor or is it because he just turned 11, and is testing the territory? He has had decreased appetite, but is it from the tumor, or is it because he's not going through a growth spurt right now? He did have a couple days of dizziness, but is it from the tumor? or did he have a little virus? We just never know. It's so scary to deal with this. Where his tumor is located, and the kind it is, eventually it will start growing again, and he will need to start chemo treatments. We just pray that the day is not today. Lets hope that the radiation is still doing it's thing, and we don't have to worry about more treatments right now.

I will leave you with a video of him, taken by Kyley without his knowledge. This is SO hilarius to us. He still has not regained full control of his right arm and hand, and he has a limp. All curtesy of the surgery. In this video, he shows that these things can have a distinct benefit.

Parenting 101 Lesson 4: What you can't teach them, let them teach eachother

Always Amazed

If you haven't been following my posts, I am so amazed at the care we receive at Duke Children's. I wanted to share with you an example of their commitment. Here is a copy of the e-mail I sent to his medical team at 9:39pm :


Dear Team,

I'm really not sure who I am supposed to e-mail about scheduling, Andrew McQueen, has an appointment with Dr. Grant on July 14th. We have noticed an increasing "attitude" for about a month, as well as lower energy for about that long. Now, he has complained of dizziness for 2 days. He also needed assistance walking once yesterday and once today. I was wondering if we should get an MRI scheduled sooner?


Thank-you,


Heidi Underhill
XXX-XXX-XXXX


Here is the reply we received at 9:43pm :


Hi there. We will try to move things up to see him sooner.
Latonya will give you a call.

Best regards,

Gerald Grant, M.D.
Assistant Professor, Pediatric Neurosurgery
Duke University Medical Center
Box 3272, Durham, NC 27710
Tel: (XXX) XXX-XXXX
Fax: (XXX) XXX-XXXX


And the reply we received at 9:46pm :

Yes, we can see him earlier as necessary. However, i would be at the ISPNO meeting from June 29th through the 3rd.

SG

**********************************************
Sri Gururangan, MRCP (UK)
Associate Professor of Pediatrics and Surgery
Director, Pediatric Clinical Services
The Preston Robert Tisch Brain Tumor Center
Duke University Medical Center
047 Baker House, Trent Drive
Durham, NC 27710

Tel: XXX.XXX.XXXX
Fax: XXX.XXX.XXXX


I am just amazed that within 7 minutes, we had received 2 replies. Did I mention that I love them? Also pray, or cross your fingers, or whatever you do. Keep Andrew in your thoughts.

not too much pain

Written 2/27/08

Andrew's PET went well, and they got back in time yesterday to make the transportation rounds. Dr. Grant wrote us a RX for the topical numbing cream, and Rick put it on Andrew an hour before his appointment. It made a big difference, Andrew was able to take his shot w/out any tears. So, we head back up tomorrow for the results. the app. is scheduled for 1:00, so we wont have to spend the night. We'll leave early, and head back after the appointment.

Worth the Trip

Written 2/26/08

Yesterday was back up to Durham. We drove 2 cars, Brittney and I in 1, and Andrew and Rick in the other. we spent the night at the hotel, and let Brit and Andrew play in the pool. Early this morning, we took the hotel van over to Duke for the MRI. It was a long one, as they were doing the brain and spine. Plus, Andrew kept coughing, so they had to take some of the pictures over. He hates IV's!!! After everything that he has been through, needles still bother him. Alot.

So, 2 hours later, we took the hotel van to another building for lunch and the appointment with doc. Grant to read MRI pics. We had to wait, wait, wait, wait, wait. But, it was worth it as Dr. Grant said he thinks that there is no need for chemo at this time. YEAAAAAAA!!!! Not trying to get overly optimistic though because he said that they still need to see the results from the PET tomorrow, but YEAAAAA!!! He said that the MRI from last month to this month has good improvement, which means that the radiation is still working. There is no sign of the miracaculous imploding cyst, which he said was probably a side-effect of the radiation. Thank-you God that it's gone. We did get some info. on the exact size and location of the tumor 4cm x 2.5cm x 4.2cm. This, compared to 6 months ago of 4cm x 3.2cm x 5.1cm. So, very good visit today.

Brittney and I drove home, while Rick and Andrew stayed for another night. They will go for the PET tomorrow, and come home. Rick, Andrew, and I will go back on Thursday for the results, and the visit with Dr. G (different then Dr. Grant)

Andrew's shunt moved during the MRI today, and it took a very long time to get it back on the right setting. Also, Dr. Grant refered us to the pediatric eye specialist up there to see if there is anything that they can do about Andrew's vision problems. We were trying to get it scheduled for the day after his neuro-psyc. in March, but they want to do it the following week, so, it looks like next month will have a lot of travel time and expense as well.

One thing that has been bothering us is that Andrew seems to be having some halucinations. He had a terrible fright a couple of weeks ago, but we thought that it was related to his fever, as he had a bad cold. Oddly, while up there in the pool with Brittney, the under-water lights were playing tricks on his eyes. He was pretty scared. So, we are going to mention it to Dr. G on Thur. just in case it is more than just his normal vision problems. Has anyone ever heard of this?

Well, I have a long day tomorrow, since I have to get the kids to 3 different schools in the morning, then go to the shop for Rick, then go to my job, which is taking a field-trip, and I wont be done until about 7:30. Hopefully Rick and Andrew will be home in time to do the rounds of picking up kids. If not, I will ask my mother and brother for help. I hate the days without Rick and Andrew, it reminds me of when they were in the hospital for 2 months.

I was going to stay home last night, because of everything going on with Brooke, and because of the inconvenience of taking 2 cars up there. but, I'm really glad that I went. I like to hear things directly from the doctors, and especially when it's good news.

Thank-God

Written 2/1/08

We were encouraged by the social worker at Duke to begin this page, as it will be an easy way to keep everyone updated at the same time. Please don't stop your wonderful, supportive phone calls, as we love these.

As those of you who know us already know, we have recently switched health-care providers from Charlotte to the Robert Preston Tisch Brain Tumor Center at Duke. I encourage you to visit their website. We are extremely excited about this switch, as we finally feel that we are in capable hands. We feel as if the world has been lifted off of our shoulders, and we don't need to make these crazy, life-altering decisions on our own or uninformed any longer.

For those of you who don't know, Andrew was scheduled for his second brain surgery on Jan. 14th. Both Rick and I were extremely hesitant and scared of this surgery, because of Andrew's experience with his first surgery, and because of our amazing Lord putting fear and hesitation into our hearts through the Holy Spirit. In the last few months Andrew's dizzy spells have increased in number, both at school and at home. He could usually recover from these, by sitting on the floor and waiting for it to pass. Unfortunately, right before Christmas vacation, Andrew had a bad spell at school, which he was unable to recover from. Rick picked him up from school, and during vacation, Andrew got progressively worse, finally unable to walk at all.

Andrew was extremely ill, unable to walk, and spending his days at work with Rick, using his wheel-chair for mobility. This is why we agreed to the surgery, which his surgeon had been trying to get us to agree to for some time. On Jan. 11th, 3 days before his scheduled surgery, Andrew got out of his wheel-chair and went outside to play at the shop (Rick's car-lot). The next day, while home with me, Andrew went outside to play basket-ball with Brooke, where he spent most of the day. The following day, Jan. 13th, we went to church, where our pastors and elders annointed Andrew with oil, and we laid hands on him to pray for healing, and a succesful surgery. Andrew later told us that little Joshua's idea of laying hands was to repeatedly push on Andrew's cheek with his little fist.

That eventing, at home, Andrew was dancing in the living room, while Rick and I looked on in amazement. These three days were extremely hard on Rick and I, as we battled the Doctor's advice with what we were witnessing. We talked, we prayed, we cried, we laughed, we fought, and we prayed some more. Sunday night, we spent over an hour in the car (where we have most of our adult conversations. The only place out of ear-shot) parked in our own yard, and tried to put into words what we both were feeling. Monday morning, the day of Andrew's surgery, we woke up at 4:oo am, both of us praying for clarity. We got Andrew ready, and loaded him into the car. while on route to the hospital, we came to an agreement. We knew what we had to do.

When we got the hospital, at our scheduled time to begin the anesthesia process, we told the receptionist we were cancelling the surgery. After speaking with the doctors, knowing we were doing this against medical advice, we gathered all of Andrew's medical records and MRI's and headed up to Duke, not even knowing how to get there. TGF verizon navigation option on our cell-phone. When we showed up at Duke, without a referral or appointment, crying for them to take our records, we know how we must have looked. When we called our family and friends, we know how we must have sounded.

They granted our appointment! The two week wait was agonizing. Fortunately as you may know, when we finally got our appointment, all of our prayers were answered. We were told that the cyst on Andrew's tumor had imploded, and that if we had gone through with the surgery, the results would have been devastating! Thank-you Lord Thank-you Lord. Thank-you Lord.

Andrew's Story

Taken off of Andrew's Fund-raiaing page. To view the page, click here


Hi!

My name is Andrew, and when I was about 6 years old, I started to get very sick. I didn't want to eat anymore! I lost a lot of weight. Then it got worse. When I was 7, when I did eat, I threw it up. Food was really disgusting to me, and I hid my food in many different places. I went to the doctor a lot, but they never helped me. I got dizzy all the time, and sometimes I couldn't see anything. I got really bad headaches, and my neck hurt. One day, when I was 8, I went to the doctor again, and everything changed. I got a CT scan! The next thing I knew, I was on my way to the city to get a MRI. I was scared, and my family was crying. I was also happy though, because I knew that these were the doctors that were finally going to help me! The next day, I had a surgery.

I don't remember much about the surgery, or the month after the surgery, when I was in ICU. The doctor said that because my brain tumor was on my brainstem, he couldn't get it all out. He also said that it was huge! Then I went to rehab. I lived in rehab with my Dad for 2 months. I learned how to use my arms again, and I learned how to stand up. I was in a wheel-chair because I couldn't walk. I also couldn't eat, because the food would go down the wrong hole. They did shock treatments on my throat though, and right before I went home, I learned how to eat! I was so excited when they took out the feeding tube, and I ate everything!

When I went home, I kept going to rehab 3 times a week, and I learned how to walk again. I got well enough to go back to school. I stayed healthy for a year, but then I got sick again. I went to another doctor, and got radiation lots of times. They had to put my head in a plastic mask and I had to lay down. The mask was bolted to the table so I couldn't move. I went 28 times. I was really tired, and I lost my hair in 2 big spots on my head. Plus, I couldn't go to school.

I got better for 7 months, but then I got sick again. I was really sick this time and I went back to using my wheelchair. My doctor was going to do another surgery, and I was scared because I almost died after my last surgery. My parents cried all the time. Then, 3 days before my surgery, I went outside to play! God made me feel better, and I could walk again. I was so glad when my parents cancelled my surgery. We switched doctors, and now I go to Duke. They keep giving me MRI's, and then we wait for the next one. I am feeling very good right now.

My tumor is a JPA. The doctor's say it is the best brain tumor to have, in the worst location. My parents said that most kids who get this tumor get to have it taken out by their doctor. My tumor can't come out because it is on my brain-stem. All of the money collected on this page will go to JPA research. I hope they can find a cure for my cancer.

Thanks,

Andrew


ETA: Andrew's fundraising page is now closed. To learn more about Juvenile Pilocytic Astrocytoma, or to make a donation in Andrew's name, go here. His is "Team Andrew"

About Us

Contact: iamdoodlebelle@gmail.com

We are a blended family with 7 children, one of whom has a brain tumor. The DoodleBelle's are: Heidi, Kyley 11, Rainia 9, Jacob 5, and Joshua 5.



The Big Mac's are: Rick, Brittney 13, Brooke 13, and Andrew 10.







We are so glad that we have eachother, and God, love, joy, humor, and fun are what get us through this crazy life of hospitals and treatments, step-family issues, financial hardship, and parenting such a large family.

I, (Heidi, a single mom) and Rick (a single dad) met when I bought a car from him in April 2003. We dated for some time, and decided to introduce our children. The kids hit it off immediately, enjoying eachother's company and loving doing things together. Throughout this time, Andrew was sick, getting severe headaches, and losing weight. Rick took him to many doctors and hospitals, who kept saying that Andrew was upset over his mother, who struggles with mental illness. Andrew got progressively worse, having vision problems, refusing to eat and vomiting after every meal. Finally Rick got a doctor to refer him for a CT scan. This was August 8th, 2006. The next day, Andrew was in emergency surgery to remove the huge (baseball size) tumor that was growing on his brainstem.

When Andrew awoke, he was paralized on his right side. He had a trachiostomy, and a feeding tube. He had a permanent shunt put in to drain excess fluid on the brain. Andrew struggled in the PICU for three weeks. When finally able, he was transfered to the hospital's rehab center, where he finally after two months, through shock treatments, gained back the use of his gag reflex, allowing him to swallow food.
Throughout this time, Rick never left Andrew's side. Brooke and Brittney, Rick's daughters, moved in with me and my four children. Still unable to walk, without the use of his right arm or left eye, Andrew was released on Oct. 17th, 2006. Because he needed homebound school services and intense rehab three times per week, I quit my job at Rick's car-lot where I was working, so that I could take care of him, and Rick could return to work. Rick and Andrew moved in with what had become the seven of us, making nine.

Andrew rapidly learned to walk, and returned to school in Jan. 2006. He continued to have PT and OT, through the school, and through private practice. How wonderful he did, until the tumor started to grow again. Andrew had 28 rounds of radiation-treatments in March and April of 2007. Unfortunately, around this time a cyst began to form on his tumor, creating more and more pressure on his brain, bringing us to the first update entry.

Oh-Yeah, plus we are engaged as of Christmas Eve, 2007.