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We are looking to find another family whose child has been diagnosed with a brainstem pilocytic astrocytoma. Our son is 3 years old, was diagnosed in April and is currently going through chemotherapy. We would love to connect with anyone who has experienced the same thing.
Hi Kimberly...I just wanted to respond to your post. My sister-n-laws fianace's son (who is 4) has a brainstem astrocytoma. He was diagnosed very young...I believe around 1 and a half as a grade 2. The dr's went in and removed part of it but could not get all of it because of its location. He then started on chemo and has been on a low maintenace chemo for a couple of years because everytime they stopped the chemo, the tumor would start to grow. Unfortunately, about a month ago after an MRI, they found another tumor in his spine in the 4th lumbar vertabrae. He then started strong chemo which has kept it from growing but it is not shrinking. Once again, he cannot have surgery because it would likely paralize him. He is scheduled to start radiation on Monday.
I will be happy to relay any questions you have to his dad. He is extremely busy (as I'm sure you know) because they are having to travel weekly to Vanderbilt for the radiation. I will be praying for your little boy....I know first hand how hard it is to have a sick child. My heart goes out to you and your family. My husband and I lost our little boy, Spencer, when he was 2 and a half to a very rare genetic disease called Levy-Yeboa syndrome.
If you don't mind me asking...what grade is your sons astrocytoma? Is the chemo working for him? I know that if the astrocytoma can be removed then the prognosis is good but unfortunately my (future) nephews' cannot be removed.
Hope to hear from you soon...God bless
-Stacy
My daughter was diagnosed with astrocytoma in June of 06 but it is no in her brainstem. Would be happy to speak with you if you would like.
Thank you so much for responding. My son's tumor is low grade, but I'm not sure if it's Grade I or II. Do you know if your nephew's tumor is infiltrating or exophytic? Bryce's tumor is exophytic and was also partially resected. He now has a trach and a G-button, and he requires a ventilator at night. Did your nephew have difficulty swallowing after the initial surgery? Bryce is on a 15 month course of low dose chemo which they say might stop its growth since they tend to grow so slowly. We've heard that the pilocytic astrocytomas don't spread to other parts of the body. Is the spinal tumor in your nephew a different type of cancer?
I will add your family to my prayer list. Thanks again.
I'm not sure to be honest if its infiltrating or exophytic. I'll have to ask his dad later....he is on his way up to Vanderbilt tonight. Nash did not have any trouble swallowing as far as I know after his sugery. When they went in to biopsy and partially remove part of his first tumor (the one on the brainstem) it did leave him with partial nerve damage to his left arm (which he now doesn't use much) I'm assuming Bryce's trach and g-tube are a result of the partial removal of the tumor? When my son was alive he also had a trach and g-tube. He didn't get his trach until a few months before he passed but he had had the g-tube since about 6 weeks old. The g-tube was actually such a blessing because it allowed him to gain weight (even though he was always on the smaller side).
You are right that astrocytomas usually don't spread to other parts of the body and doctors don't understand why another one has popped up on Nash's spine. They believe it is also an astrocytoma, however it is wrapped in spinal nerves and cannot be cut on. This is why they have decided to do the radiation. We are very hopeful that this will work but of course it carries risk just like anything else. The low dose chemo that Nash was on did stop his growth somewhat but to me he is not that much shorter than any other 4 year old.
I pray that Bryce will be healed....just hang in there and take it day by day....thats all you can do. Talk to you soon.
Stacy
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