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  #101  
Old 09-03-2008, 01:05 AM
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Default Re: Time for Family to Stick Together

Chris V posted a very touching & informative blog about Madison on his MySpace.
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  #102  
Old 09-03-2008, 09:28 AM
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Default Re: Time for Family to Stick Together

Thanks for the heads up!

I will post it below this for those of you who dont have myspace.
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  #103  
Old 09-03-2008, 09:29 AM
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Default Re: Time for Family to Stick Together

FROM CHRIS VENNEKAMP's Myspace BLOG found at: http://blog.myspace.com/index.cfm?fu...613&indicate=1

Madison will be 12 this September, and is in the 7th grade. He is the kind of person that thinks about what others need and want before him. He is a hero to many, especially his younger brother who is 8. At a young age he declared that he wanted to be the Supreme Court Judge, and go to Harvard. He has worked very hard to maintain a straight "A" average throughout school. He loves to paint and can draw really neat characters, including people he knows. Madison is quite the comedian and actor. He has even got to appear on Cartoon Network's Fried Dynamite. He enjoys wrestling on the trampoline with his friends and with his dad. Madison also enjoys building Star Wars Legos, playing the Xbox 360, listening to music, and watching movies.


A few weeks before school began we noticed that he had a cough. It was a cough you have heard many times throughout your child's life. No other symptoms like runny nose, fever, or congestion were present. After no success with cough medicine we made an appointment with his doctor. He was given a cough suppressant on a Friday and over the weekend his dad and I noticed that he had lost a lot of weight. That Monday, he got out of breath going up the stairs, and then again when he walked across the street to a friend's house. The doctor at that point authorized an x-ray. We thought that he may have bronchitis or phenomena but we never imagined the diagnosis would be cancer.


We were sent to Children's Healthcare of Atlanta at Scottish Rite and then on to Egleston. Madison's x-ray showed one normal lung and the other was barely there. Fluid and a mass had condensed his lung to almost nothing, and pushed his heart and trachea to the other side of his chest. After several long days and many tests, Madison was diagnosed with stage 3, T-cell Lymphoma, which is a Non-Hodgkin Lymphoma (NHL) that affects the thymus.


According to Kids Health (2008), the thymus is a gland located in the middle of the chest. Pressure on the thymus was described to cause a cough, and shortness of breath which were the symptoms we noticed. There are also problems with the blood flow in the heart. Other symptoms acknowledged by this reference that Madison displayed included fatigue, night sweats, and weight loss. This resource mentioned that NHL is rare in children under the age of 3 but more likely to occur than Hodgkin's in kids younger than 15. Nothing specific has been found to cause childhood lymphoma. According to Kids Health there are four stages of lymphoma and each stage determines what treatment plan is best. According to Freedman and Friedberg (2008) the stages of NHL are based on the amount of tumor sites, their location, and whether systemic "B" symptoms are evident. Madison's stage three is defined by Freedman and Friedberg (2008) as "having lymph node involvement on both sides of the diaphragm." Kids Health (2008) stated that Chemotherapy was the most common type of treatment for Non-Hodgkin Lymphoma. When discussing the chances for a cure, Kids Health explained being cured is known as being cancer free for more than five years. Non-Hodgkin's was noted as being an aggressive disease but with recent improved treatments the cure rate is 70% and up. Some Non-Hodgkin's Lymphomas have cure rates as high as 90%.


Madison will be involved in a two year treatment plan. This will involve weekly treatments as an out-patient, several 3 day in-patient stays. Treatment begins with a more aggressive style and then slows down hopefully within six months. Procedures include weekly blood work, receiving medicines thru a pic line (much like an IV in the arm), testing spinal fluid from spinal taps, bone marrow biopsy, and taking several medications at home are all part of the treatment process. One medication, Prednisone, which is a steroid, has caused Madison to have steroid induced diabetes. This seems to be common with treatment in several different types of childhood cancer. He is required to watch his carbohydrate intake and monitor his blood glucose levels before meals. If they are high he receives fast acting insulin, Humalog. Lantus, which has long lasting effect, is insulin that he receives one time a day. Madison will not remain diabetic forever, when the steroids are stopped then he will be able to create his own insulin again.


There has been so much information provided to us. Children's Health Care of Atlanta at Egleston, located at the Emory campus in Decatur, coordinated consults with the doctor's, surgeons, oncologists, endocrinologist, respiratory therapist, Child Life Specialist, social workers, diabetes nurse educator, in-patient teacher/liaison, detailed at home care instructions, and great resources. The information and resources have been very helpful and overwhelming at times. A list of resources, websites, and research has been provided to give a more in depth look at childhood cancer, lymphoma, diabetes, and other related material.


References


Kids Health, Childhood Cancer: Lymphoma. (1995-2008) The Nemours Foundation. Retrieved on 8/15/2008 at http://kidshealth.org/parent/medical..._lymphoma.html


Freedman, MD and J. Friedberg, MD (2008), Staging and prognosis of non-Hodgkin's lymphoma. Retrieved on 8/15/2008 at http://www.uptodatonline.com/online/...056&view=print


Non-Hodgkin's Lymphoma, Retrieved on 8/15/2008 at http://kidshealth.org/teen/diseases_..._hodgkins.html


Resources that helped us understand Non-Hodgkin's Lymphoma


Lymphoma in Children and Adolescents, http://www.lymphoma.org/site/pp.asp?...EImE&b+2255181
Classification of the lymphomas, http://www.uptodateonline.com/online...348&view=print
Approach to the diagnosis of non-Hodgkin's lymphoma, http://www.uptodateonline.com/online...075&view=print


Diabetes

American Diabetes Association http://www.diabetes.org/for-parents-and-kids.jsp.
Children with Diabetes http://www.childrenwithdiabetes.com/d_0q_000.htm
Juvenile Diabetes Research Foundation http://www.jdrf.org/index.cfm?page_id=102709
National Institute of Health http://ndep.nih.gov/diabetes/pubs/Youth_SchoolGuide.pdf


Nutrition

American Dietetic Association (ADA) www.eatright.org, 1-800-366-1655


Cancer Center

The Aflac Cancer Center and Blood Disorders Service of Children's Healthcare of Atlanta at Children's at Egleston, 1405 Clifton Rd NE, Atlanta, GA 30322, 404-785-GIVE or 404-785-6000, www.choa.org


Transitional Housing

Ronald McDonald House, 792 Houston Mill Rd
Mason Guest House, 1555 Shoup Court, 404-712-5110
Atlanta Hospital Hospitality House, 1815 Ponce de Leon Ave. NE


Help for Young Patients

www.mycampsunshine.com
Camp Sunshine, 404-325-7979

1850 Clairmont Rd, Decatur, GA 30033-3405

www.planetcancer.org
www.2bMe.org
www.teenslivingwithcancer.org


Research, education, patient/family support, coping

www.curechildhoodcancer.org, 770-986-0035
www.deliverthedream.org, 1-888-OUR-DREAM


Pediatric Oncology (cancer) Web Sites

American Cancer Society www.cancer.org, 1-800-227-2345
Childhood Leukemia Foundation www.clf4kids.org, 1-888-CLF-7109, They provided an awesome Hope Binder to the parents/caregiver to help organize and keep track of everything during your treatment. It also includes necessary information related to childhood cancers.
Children's Cancer Association, www.ChildrensCancerAssociation.org, 503-244-3141,7524 SW Macadam, Suite B, Portland, OR 97219 Was provided with a National Childhood Cancer Resource Directory, Kids' Cancer Pages, 2nd Edition, from the Children's Cancer Association.
Lymphoma Research Foundation, www.lymphomainfo.net
Lymphoma Information Network, www.lymphoma.org
Ask Noah about Cancer, http://www.noah-health.org/english/i...er/cancer.html
Beyond the Cure www.beyondthecure.org
Blood and Marrow Transplant Information Network www.bmtnews.org
Cancer Index www.cancerindex.org
Leukemia & Lymphoma Society www.leukemia.org
National Coalition for Cancer Survivors www.canceradvocacy.org
National Cancer Institute www.cancer.gov, 1-800-4-CANCER
Pediatric Oncology Resource Center www.acor.org/ped-onc
National Marrow Donor Program www.marrow.org
Patient-Centered Guides: Childhood Cancer Center
www.patientcenters.com/childcancer

www.cancer.gov/publications
Books

Coping with Childhood Cancer, David Adams and Eleanor Deveau
100 Questions & Answers, About Your Child's Cancer (2005) William L. Caroll, MD and Jessica Reisman, CSW, Jones and Bartlett Publishers, Sudbury, Massachusetts. www.jbpub.com
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  #104  
Old 09-03-2008, 09:31 AM
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Default Re: Time for Family to Stick Together

we need to make this years HALLOWEEN extremely special for madison... thank you guys who have already sent love and presents and stuff!

It IS helping, he lights up like a christmas tree when he sees that so many people he has never even met yet are behind him.

This is hard for all of us - but especially for Chris and his wife, thank you for helping us help them, we are all in this together.

Who says tattoo type folks are assholes huh? looks like there is still some good in this dark world after all.
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  #105  
Old 09-03-2008, 09:42 AM
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Default Re: Time for Family to Stick Together

Why would "GOD" allow Madison and others like him to get cancer? This is the obvious question, but the answer is not quite as obvious.
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  #106  
Old 09-03-2008, 09:57 AM
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Default Re: Time for Family to Stick Together

I read that blog this morning. It made me tear up. Madison is a true inspiration.
I am glad to be a part of this family.

Thank you to everyone who has sent in cards, presents, kind words.

Talk about an amazing group of people in the AON family!!

xox
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  #107  
Old 09-03-2008, 10:10 AM
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Default Re: Time for Family to Stick Together

yes he has gotten some amazing encouragement and gifts! please keep em comin'!

hes got 2 years of this fight minimum.... so theres still time!


plenty of it!
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  #108  
Old 09-03-2008, 10:48 PM
robhamilton
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Thumbs up Re: Time for Family to Stick Together

Quote:
Originally Posted by BRANDON BOND View Post
we need to make this years HALLOWEEN extremely special for madison... thank you guys who have already sent love and presents and stuff!

It IS helping, he lights up like a christmas tree when he sees that so many people he has never even met yet are behind him.

This is hard for all of us - but especially for Chris and his wife, thank you for helping us help them, we are all in this together.

Who says tattoo type folks are assholes huh? looks like there is still some good in this dark world after all.
Here is a suggestion for HELLoween this year just for Madison. Since so so so many awesome people are bringing smile after smile to this amazing strong spirited young man face, here is what we should do...and this can transform over into other Holiday that are coming with a few twists of course...BUT for HELLoween this year START START START sending him all the most GHOULISHLY Masks you can find in your city in time for them to get to AON in time for Madison to have them when the spooks are out that night...Every city has at least one store that sell this exact stuff every year then other stores sell it all year long for parties. Just find some goulishly--evil--goblin--walkin the dead zombie head mask and since he like StarWars Legos put a box in the mask...now the bigger your mask the bigger the legos gotta be...

Since Madison is trying as hard as he can to just get some sense of normalcy back into his life with all the aggressive treatments he has and will have to continue to suffer through lets bring HELLoween to him this year. ok? ok good! I knew you guys would love to help out!!

So if you live out of town get that gear into AON ASAP. If you live in the ATL we can all meet up on Devil's night out and bring HELLoween to Madison. And I am sure we can make this Holiday and the rest of them ones he will remember for a long long long time.

So if you guys and gals are down you know what to do. As Long As Madison fights then we fight with him! Right? Damn right we do! So get that gear rollin through the doors @ AON! there you go that the spirit!!

Thanks everyone,

Rob damn you stink Jarvis go away with that sh$t
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  #109  
Old 09-03-2008, 10:54 PM
robhamilton
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Post Re: Time for Family to Stick Together

Oh and Chime in on this one if you are going to help. Because it would really be dope if we could get Madison some of the top 50 scariest masks that are out there this year!
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  #110  
Old 09-04-2008, 09:09 AM
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Default Re: Time for Family to Stick Together

For everyone who has sent a package to Madison or Emmy.
Thank You !!!
There is nothing that makes a person feel better then to put a smile on the face of a sick child !!!!
Keep up the great work, and be proud that you all have helped make these children Smile !!!
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