CANCER R U STUPID

CANCER R U STUPID
Kylie, Olivia, Cody, Isabella and Averi - June, 2010. We now know Cody, Averi and Isabella all suffer from Lynch Syndrome III

Friday, July 24, 2015

Could it be Lymphoma, an Immune deficiency or infection?



We took, Isabella, to Pittsburgh children's hospital yesterday for a CT scan. In the last couple months, I have noticed multiple swollen lymph nodes on the back of her neck. With her cmmrd gene mutation, she is at high risk for Lymphoma, leukemia, colon cancer, immune deficiency and many other types of cancer.

After meeting with Dr. Mason, and reviewing the CT results, he is concerned she could possibly have Non-Hodgkins Lymphoma or an immune deficiency. 
Isabella, will be going in for a ultrasound guided biopsy, sometime next week. Dr. Mason also ordered an array of blood tests to check for Lymphoma, an immune deficiency or any other type of infection or blood related cancer.

The most concerning thing to me on the CT scan...an enlarged left supraclavicular  
Lymph node that measures 1.0 cm by 1.7 cm by 2.7 cm. An enlarged left supraclavicular is also known as, Virchow's node (or signal node) is a lymph node in the left supraclavicular fossa (the area above the left clavicle). It takes its supply from lymph vessels in the abdominal cavity. Virchow's node is also sometimes coined "the seat of the devil" given its ominous association with malignant disease.
There is still a possibility that it's absolutely nothing or something minor.
Inspite of everything, Isabella, is her normal, happy self. She is full of energy, has a great appetite and spends her days playing with all her friends in our neighborhood. 

Thank you everyone for your continued prayers for Isabella and our family. I will continue to keep you updated on any new information.

Thursday, June 11, 2015

3 point scoring system to see if you or your child should be tested for Cmmrd!


Cmmrd, is thought to be highly under diagnosed, genetic disorder. Follow this 3 point system, to see if you or your child should be tested for for this genetic mutation. It could save you or your child's life. The treatment for Cmmrd, can be very different from standard conventional chemotherapy. Certain chemotherapy agents are contraindicated, with Cmmrd, such as O6-methylating agents. An example is, temozolomide, which is a commonly used treatment for glioblastoma. This drug causes mutations in tumor DNA that cannot be repaired by patients with a loss of MMR function. In vitro studies showed a similar resistance with busulfan, thiopurines and cisplatin. After going over this Cmmrd indication chart, and you or your child scores >3 points, contact your oncologist or geneticist for Cmmrd testing.
Indication for CMMRD testing in a cancer patient≥3 points
Malignancies/premalignancies: one is mandatory; if more than one is present in the patient, add the points

Carcinoma from the LS spectrum* at age <25 years

3 points
Multiple bowel adenomas at age <25 years and absence of APC/MUTYH mutation(s) or a single high-grade dysplasia adenoma at age <25 years

3 points
WHO grade III or IV glioma at age <25 years

2 points
NHL of T-cell lineage or sPNET at age <18 years2 points
Any malignancy at age <18 years1 point
Additional features: optional; if more than one of the following is present, add the points

Clinical sign of NF1 and/or ≥2 hyperpigmented and/or hypopigmented skin alterations
Ø>1 cm in the patient

2 points
Diagnosis of LS in a first-degree or second-degree relative

2 points
Carcinoma from LS spectrum* before the age of 60 in first-degree, second-degree, and third-degree relative

1 point
A sibling with carcinoma from the LS spectrum*, high-grade glioma, sPNET or NHL

2 points
A sibling with any type of childhood malignancy

1 point
Multiple pilomatricomas in the patient2 points
One pilomatricoma in the patient1 point
Agenesis of the corpus callosum or non-therapy-induced cavernoma in the patient1 point
Consanguineous parents1 point
Deficiency/reduced levels of IgG2/4 and/or IgA

1 point

*Colorectal, endometrial, small bowel, ureter, renal pelvis, biliary tract, stomach, bladder carcinoma.
CMMRD, constitutional mismatch repair deficiency; LS, Lynch syndrome; NHL, non-Hodgkin's lymphomas; sPNET, supratentorial primitive neuroectodermal tumours.

Wednesday, June 10, 2015

Leave no stone unturned!



Isabella had an MRI, on Monday. I'm so excited to report, they saw no tumor growth!! I cannot even begin to express how relieved I feel! It's a miracle. 

I know how rapidly both, Cody and Averi's brain tumors grew. Averi, had a complete tumor resection in March 2012. By June 2012, her tumor had grown back with a vengeance. In September, it was so large that it was blocking her ventricles, requiring emergency surgery to have a shunt placed in her head to, remove the pressure.

Cody had a clean MRI in, July 2009. On September 26th, 2009, after complaining of terrible headaches, he was diagnosed with a baseball sized tumor in his cerebellum.

So what's different with, Isabella? After lots of prayers, research and discussions with her father, we decided to start, Isabella, on cannabis oil. Could this possibly be the reason she has not had tumor growth? Absolutely. I know all the taboo that is surrounded with the use of cannabis oil. I have spoken with quite a few people who are in remission from taking CO. Many of these Cancer patients, told me they have had many friends, who no longer speak to them because they use CO for their treatment of Cancer. I am completely shocked and saddened. I do not understand why someone who is battling for their life, and having success, against all odds...would be treated with such hatred! Jesus, said, "love your neighbor as yourself." Not love your neighbor, only if you agree with everything they do! 

 Quite frankly, we use to completely be against it! It is no secret we struggled with Cody wanting to smoke marajuana. I remember, near the end of his life at, St. Jude, he called many family members, begging them to find some weed, and sneak it in the hospital...My beautiful, son..he could make me laugh harder than anyone in the world. Cody, is probably smiling down from heaven, thinking, "Mom, are you stupid? I told you  weed helps with brain cancer."


I don't know if CO is end all answer in the treatment of cancer, I pray it is! I pray for the day, when people speak of cancer as, some terrible plague from the past...that not one single person, ever again has to endure the pain, cancer has inflicted on so many lives!

My goal is to leave no stone unturned! If our story can help at least one 
person, come to God, not be afraid to think outside the box, find a cure for cancer, then it was all worth it!  

Thursday, May 28, 2015

Should your child be tested for Cmmrd? Three point guideline criteria, for Constitutional Mismatch Repair.









Indication for CMMRD testing in a cancer patient≥3 points
Malignancies/premalignancies: one is mandatory; if more than one is present in the patient, add the points
Carcinoma from the LS spectrum* at age <25 years3 points
Multiple bowel adenomas at age <25 years and absence of APC/MUTYH mutation(s) or a single high-grade dysplasia adenoma at age <25 years3 points
WHO grade III or IV glioma at age <25 years2 points
NHL of T-cell lineage or sPNET at age <18 years2 points
Any malignancy at age <18 years1 point
Additional features: optional; if more than one of the following is present, add the points
Clinical sign of NF1 and/or ≥2 hyperpigmented and/or hypopigmented skin alterations Ø>1 cm in the patient2 points
Diagnosis of LS in a first-degree or second-degree relative2 points
Carcinoma from LS spectrum* before the age of 60 in first-degree, second-degree, and third-degree relative1 point
A sibling with carcinoma from the LS spectrum*, high-grade glioma, sPNET or NHL2 points
A sibling with any type of childhood malignancy1 point
Multiple pilomatricomas in the patient2 points
One pilomatricoma in the patient1 point
Agenesis of the corpus callosum or non-therapy-induced cavernoma in the patient1 point
Consanguineous parents1 point
Deficiency/reduced levels of IgG2/4 and/or IgA1 point

*Colorectal, endometrial, small bowel, ureter, renal pelvis, biliary tract, stomach, bladder carcinoma.
CMMRD, constitutional mismatch repair deficiency; LS, Lynch syndrome; NHL, non-Hodgkin's lymphomas; sPNET, supratentorial primitive neuroectodermal tumours.