A couple of weeks ago I posted a few suggestions on how to deal with your child being diagnosed with NF and what helped me cope the most. If you missed the post My Child Has NF…Now What? , click on the link to read the post.
Today, I’m sharing one common result of the disorder is an optic nerve tumor called Optic Glioma, a type of brain cancer. An Optic Glioma, as a result of NF, grows slowly and can stay dormant for many years, unlike cases without NF. My daughter has two Optic Gliomas referred to as Bilateral Optic Gliomas because they are located across from each other. Bilateral Optic Gliomas are a sure sign of NF.
Here in the USA doctors monitor the tumors for growth using the MRI along with yearly vision tests. Undergoing an MRI scan can be an overwhelming experience. It is important to prepare your child for an MRI scan to prevent them from feeling upset and anxious.
If or when an Optic Glioma starts to cause vision issues, your doctor might refer you and your child over to an Oncologist to begin Chemotherapy. It’s a scary thought, I know, I’ve been there. Being prepared helps ease the process. I’ve created a list to help you out.
1. What are you expecting to accomplish with chemotherapy?
2. What are the risks of treatment?
3. Is there an alternative treatment?
4. Where will my son or daughter receive the chemotherapy treatments?
5. What drug or drugs will they receive?
6. How often and how long will my child receive treatment?
7. What can I do to make the treatments easier for my child?
8. What side effects should I be aware of and how to lessen the impact?
9. What information should I give to my child’s school?
10. Will my child be able to participate in normal activities?
The list can go on and on. I find it helpful to jot down my questions or concerns so I don’t forget to ask. This process can become overwhelming at times. Don’t feel bad if you need to call the office to ask a question you forgot to ask. They’re there to help. The Oncologist has been down this road before and can answer your questions.
Chemotherapy is scary and even scarier when it’s your child that has to face treatment. It’s manageable and something you can get through. If your child is in this situation, I wish you the best and feel free to email me with any concerns, questions or if you just want to say hello at scrapality@gmail.com.
I hope you have a wonderful day! Thanks for stopping by.
We all pray that we never have to ask these questions, but you sharing them is great! We never know what life will bring. Thanks for sharing with SYC.
hugs,
Jann
Such a heartfelt post. Thanks tons for linking to Inspire Me. Hugs, Marty
Thank you for sharing from the heart…Many hugs and much love!
Being prepared and asking as many questions as possible always helps make a scary situation easier to deal with . And you are right, the experts have been down this road many times and are there to guide you through it. Thanks so much for sharing!
I also pray I and my family will never need to ask these questions. I am wishing you and your child the best. A very heartfelt post and I thank you for it.