Tuesday, October 6, 2015
Isabella was finally approved for the compassionate use of PD-1 immunotherapy!! Woo hoo!! Dr. Mason is finishing the paperwork for the FDA and Institutional approval. Isabella should be starting the PD-1 immunotherapy sometime in the next couple weeks.
Isabella, left Saturday morning, to visit her Dad for 2 weeks. It's really hard being away from her right now, but she is doing wonderful, especially since she is almost completely off her steroids. Lol!!
Decadron is a steroid they use to decrease edema in the brain. They administer it after brain surgery or when you have a tumor that is causing increased pressure in the brain. Although, it's very effective in reducing edema, it can also make your child very agitated, anxious, angry, hungry etc. etc.
Needless to say, after a few hours of, Isabella, being placed on Decadron, I was counting down the days and hours until the doctors weened her off of the, "Monster Med's" (aka. Decadron). I cant wait to have my sweet, kind and usually polite little girl back!! She's almost back....only 3 days...72 hours until she is done with the medication. LOL. Yah!! Happy Dance!
Helpful tip-sometimes Physican's forget tell you the side effects of Decadron. I have spoken to many family members whose loved one is battling brain cancer. Many times, no one has told them the possible emotional side effects and personality change that can be caused by Decadron. It's important to know they cannot control the anxiety, anger, frustration and eating everything in sight, caused by this medication. Don't take it personal. If your loved one is experiencing suicidal thoughts contact your doctor immediately. Your doctor can prescribe a medication called
Cylexa, or a similar anti-depressant, that can reduce the emotional side effects of Decadron. Also, your loved one should be on Pepicid, or some type of acid reducer, to help with the digestive side effects of Decadron.
I'm not a Phycisian....just a Mom and a nurse. Lol.
We are waiting for Dr. Tabori, in Toronto, to finish testing her tumor samples to see what immunotherapy drugs will be the most effective against her cancer. He is very hopeful the PD-1, will be beneficial in killing her brain tumor.
Isabella has approximately, 13,634 mutations in her tumor. The hypothesis is...the PD-1 immunotherapy will boost her immune system, the immune system will then recognize the massive amount of mutations in her tumor and begin attacking it. The more mutations the more hope for success!
We are completely humbled by the all the cards and packages that were sent to Isabella!! I cannot even begin to express how thankful we are for all the love and kindness shown to our daughter! She has been SO HAPPY, opening and reading every single card sent. Thank you, thank you, Thank you....from the bottom of my heart!
Friday, September 25, 2015
Isabella was discharged from the hospital this afternoon. She is doing so much better.
We found out yesterday afternoon that the surgeon was able to remove over 95% of Isabella's tumor...which is considered a full resection!!! Hallelujah!! Thank you everyone for your prayers... They are working!!
Tuesday, September 22, 2015
Isabella is finally out of the ICU as of last night and is feeling so much better! She had a rough few days in the ICU...On top of brain surgery, not being able to eat, high doses of steroids, not being able and bed rest took a toll on her. Also worth mentioning, she can't believe there is no playroom in the ICU. Lol.
Isabella will be in the hospital until at least Friday. They are giving her prophylactic IV antibiotics due to a breach in the sterile field during surgery. The Infectious Disease Doctor, thinks her risk of infection is very low. It's better to be safe than sorry.
The MRI results looked good, although they noted a small hemorrhage in the tumor cavity. We are waiting to speak with Dr. Mason to find out exactly what his interpretation is of her post surgical MRI results.
Thank you, thank you, thank you for all the prayers, cards, love and support!!
Friday, September 18, 2015
We also found out today that Isabella is more than likely approved for the compassionate use of the immunotherapy drug, PD-1. If everything goes as planned, she should be able to start the PD-1 sometime in the next 2-4 weeks. I found out today, the doctors in Toronto, have a patient with Bell's gene mutation that is doing extrodinary on the PD-1 immunotherapy. I still believe in miracles...my heart is filled with Hope...And I know with God all things are possible!
Isabella had a seizure last night. They took her to Pittsburgh Children's Hospital by ambulance. Surgery is scheduled for 9:30 this morning. The surgeon is going to resect as much of the tumor as she can, safely out of her left parietal lobe, Please pray Isabella has a safe and successful surgery with no deficits. Thank you for everyone's continued prayers and love for our little girl!! I can't thank you enough!!