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

Wednesday, September 2, 2015

Cards for Isabella

Isabella, got this beautiful, inspirational  picture in the mail today from her, Aunt Mellisa. The smile on her face, brought such joy to my heart. It made her entire day! After opening her picture, Bell said, " I love getting cards, would you please ask people to send cards, because it makes me so HAPPY." 

Anyone who would like to send, Isabella, a card you can mail it to:
937 Maryland Ave. 
New Castle, Pa 16101
Thank you so much!!!!!!!!

Yesterday was a rough day. Isabella gets an aura before she has a seizure. Her fingers on her right hand start to go numb...and it quickly progresses up her arm..until she goes into a seizure. The fear in her eyes is heart breaking. Thankfully, we have a special medication we give to her right when she starts feeling the aura...and it seems to always prevent her seizure. The Aura happened 2 times yesterday. The last time we called 911. They got here quickly, and shortly after the sensation went away. They recommended getting her an electrolyte drink. After drinking a bottle of pedialyte, she felt much better. I think the long flight home from Hawaii, and the 6 hour time difference has been rough on her. 
She woke up feeling much better today. We are taking her to sign up for dance this evening with her friend, Kayla. She is so excited to start dance. 
Thank you for everyone's continued prayers, love and support. Thank you for making such a huge difference in our little girls life!

Sunday, August 30, 2015

5 years ago went to heaven.

Journal entry, written by Cody's dad on August 31, 2010...5 years ago today!!

We write this today with heavy hearts saddened by ALL of our loss!! Cody Michael Mading Passed away today at 7:00 am. He was surrounded by people who loved him! He did not suffer and went out of this world peacefully! I loved my Son with all of my heart from the moment he opened his eyes to the last moment of his final breath! As I write this I cant help to think of how many people who loved Cody as much as we did! The way Cody's life touched so many amazes us, we new he was a special kid with inspiring faith and a stubborness that was beyond explanation! Cody had a heart of gold, his kindness and compassion for the weak and underdog often went unnoticed because of his strong willed, say it like it is attitude! That being said, it is obvious that the people who knew him most was touched by this personal side of Cody! His unshakened faith and strength through this whole experience has been unbelievable! He touched the lifes of so many up here by doing it his way! He never said or did what he thought the doctors or even what we wanted him to do or say, thats Cody! He followed what he believed and claimed his faith and direction from God! So many times entering or exiting a surgery he would ask for prayer and more than once, he told us, how he had prayed for the people praying for him! 
I prayed for life and rebuked death from 3:30 am to shortly after his passing hoping, believing, and expecting our precious boy to get up and claim his miracle! That hope came and passed but, Gods presence was with us. I believe Cody was next to Jesus looking down on us before his body passed! As I prayed with my eyes closed, head pressed closely on his, holding his hand, that Mom the night before had finally took the oppurtunity to Manicure while he was sleeping, the only way he would let her! I saw Cody with his long hair and awesome smile,  my Grandpa Stewart, and my nephew baby Mathew together! Although I continued to pray long after that experience,  my prayers changed from asking God to let us keep Cody, to God trying to convince are stubborn boy to come back home! Selfishly I wanted so desperately for Cody, our family, and all of our and his friends to have this miracle! I can't help but feel a sadness and feeling of defeat coming home from just losing a battle, fight, or away game. Know that we gave it are ALL and we never gave up our fight! Words can't discribe the courage and toughness of Cody Michael Mading, he was truly one of a kind! I believe he was hand picked by God to go through this experience. I could not have done what my son made look so easy! I never once saw one tear or heard one comment about feeling sorry for himself. Never once did he blame or even question Gods intent! I still believe God brought us to Memphis where Cody's salvation was secured, the most important thing! For all of you reading this know that we have never and will never blame God! God has given us so many blessings and beutifull memories of Cody! We will continue to serve and praise our God and rely on him for our strength, salvation, and look forward to the day when we stand together as a family again in the presence of the creator of all things! It has been my honor to have walked with my son through his journey and destiny, witnessing the strength and courage of a special young man named: Cody Michael Mading!!! You will truly be missed by so many! We love you Cody!!

Friday, August 21, 2015

Isabella's brain tumor doubles in size, in less than 2 weeks! Praying for a miracle!

Isabella's MRI from last night.

Isabella, Kylie and Olivia went to visit their Dad, in Florida last week. Isabella, was doing great and then yesterday, her right arm started to go it did before her last seizure. They called 911, and took her to Lee Memorial Health Park. After giving her an MRI, they informed us her tumor has doubled in size in less than 2 weeks. She was transported, by ambulance, to St. Petersburg, Florida to be evaluated by her surgeon, Dr. Tuite.
I spoke with Dr. Tuite, this morning, after they gave her another MRI. The tumor is in 2 places and is infiltrating her brain. At this time, he does not recommend surgery because he is concerned with the neurological deficits it would likely cause, and would be unable to get a full resection. He recommends, Isabella, to continue with her plans of coming home tomorrow, we are all going to, Hawaii, on Monday, for her Make a Wish trip. 
Although we are extremely heartbroken, We are not giving up HOPE!!!! With God, all things are possible!
Isabella's oncologist in Pittsburgh, is working alongside, Dr. Tabori, at Sick Kids in Toronto, Canada. We have applied for compassionate use, of a 2 new promising immunotherapy drugs, Anti PD-1 and Mek inhibitor. She should be able to start the immunotherapy sometime in the next 2 weeks, without having to put her through radiation, which is not curative and will only damage DNA, that her body is unable to repair. 
We are also consulting with other holistic physician's, around the world, to see if there is any other possible course of treatment that could possibly save the life of our beautiful, precious little girl! 
I am so thankful for everyone's love, prayers, and kindness over the past several years. I am truly grateful and there are not enough words or tears to share with all of you!!!
Bell and her cousin, Storm, on Wednesday.
Bell, Olivia, Kylie and their cousin, Cash. On Wednesday. 

Tuesday, August 11, 2015

2 Seizures, 2 Brain lesions...Please Pray!

Isabella, and her friend, Kendra, with their new haircuts. A few days before her seizure.

Isabella, had 2 seizures on Sunday evening. She was taken by ambulance and admitted to Pittsburgh Children's Hospital. After giving her an MRI, they discovered she has 2 new lesions on her brain. One on her left temporal lobe and the other on her right parietal lobe, where her last tumor was resected. 
She is doing well, in spite of everything.
We are praying about the next step to take in her treatment.
I have started giving her CO again and her Dad purchased a holistic medication from Macedonia, called Varumin. It is suppose to help boost her immune system. 
We have also contacted Dr. Tabori, at Sick Kids hospital in Toronto, Canada.  We hope and pray that he can put her on the new PD-1 trial, without first having to put her through, radiation treatments. They cannot, by law, start her on the PD-1 trial in the United States, without radiation.  
We know, Isabella, cannot repair her own damaged DNA, so if she is given radiation, it is very likely to cause more DNA damage that her body is unable to
Please, Please keep, Isabella, and our family in your prayers as we continue the battle to find a cure!!

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 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!