You are probable wondering 'what is Medulloblastoma?' It is a type of cancer that Kevin has. The Neurosurgeon who did Kevin's surgeries is at a conference right now and won't be back until Monday the other neurosurgeon wants to give up on trying to get Kevin's body to process the CFS (aka brain fluid) and just put a shunt in tomorrow. He will also need to get a port inserted into his chest for Chemo. I am very scared they are doing operations without fully investigating. We were originally told they were going to challenge his EVD over a couple of days. They gave it less than 24 hours. From what I have learned tonight a shunt will more than likely fail within the first two years and carries a risk of infection. There is another procedure called third ventriculostomy, I am going to ask tomorrow morning why they aren't considering this.
I had to pull Kevin's MRI's CT scans, list of procedures and pathology for insurance purposes and decided to read it over before sending it to the insurance company. I feel like I am getting more information from pulling his info than from the doctors.
Okay, happy stuff! Kevin was begging most of the day to go down to the library. He walked down there with the assistance of 3 physical therapist (1 therapist was training the 2 others). They took the walker, but Kevin on the way back said he didn't need it. I am so happy he has this determination. It is his determination that gives me most of the hope.
Rachel
2 comments:
Hello - my name is Bryan Scheck and I found your blog because I get Google Alerts for anything including 'medulloblastoma'. My son Henry (3) was diagnosed last October with the very same thing. He's been through three rounds of chemotherapy and is doing well. I'm so very sorry that you have to go through this. If you feel you need to talk to another family, please don't hesitate. My contact information is below.
We are being treated at Johns Hopkins in Baltimore, MD and feel we've gotten excellent care. Don't be afraid to get second opinions as time allows. St. Jude's is also very good about that as I understand. Most of all take care of yourselves so you can take care of your children and accept the help of family and friends that offer.
Lots of love,
The Scheck Family
Bryan Scheck
301.730.0460
bryanscheck@gmail.com
http://www.HelpHenry.info
Mike, Rachel, I just found out about this yesterday from an e-mail from Bobby. We can't imagine what you're going through, but know that our thoughts and prayers are with you. We would like to do something for you and or Kevin or both if possible. Can we bring a meal over, do some laundry, does Kevin want some books, can we make cards for him? Please suggest something, anything just to allow us to be part of your healing and support network. Kids are resilient, and God willing, it will work out. Hang in there and we await your response.
Best wishes and love to you all,
Christian
cdepauli@grede.com
248-275-8333
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