How do you live a normal life???......

Hey all,

That is the question I keep asking myself. When does the worrying ever stop? Never. Sorry I haven't updated sooner. A lot has been on my mind. I hadn't figured out how to let it out yet. Yesterday we went to Austin's one month radiation follow up appointment. As I sat there talking to mom about how I wondered if that appointment was going to be a waste of our time, (because the very first appointment we had with them they didn't have all their ducks in a row)little did I know what I would learn. Dr. Eng who is head of radiation there at CTRC, discussed with us Austin's CT scan from August 23, 2006. The area that they radiated, there was no comments which is a good thing. The CT scan showed a "bulge" in his chest area. This was all news to us. Dr. Eng felt it may not be anything. He even said it may be a part of his growth. I told him Dr. Patel has not even said a word about it. Dr. Eng said from his stand point that he has only read the report and has not seen the actual CT scan. He tells us, when you find something like that you have to look at the patient for symptoms. Austin has no symptoms at this time. He feels he will be fine. They will just watch it. He said he would be glad to view the CT scan to look into it more. Both Dr. Eng and Dr. Jones did a physical exam on Austin. Dr. Eng felt that the node behind Austin's right ear was a little large. Dr. Jones reminded him he was being treated for and ear infection. So he said that was the reason why then.
I was stunned at all of this. Lost for words. Now it all makes sense to me why Patel has looked blank with Austin's counts dropping. All I could think of was is this nasty beast back? But I had to keep telling myself that Patel has told me all the test have come back normal. It was a hard night for me but I kept my mind off of it by studying for my test.

Today we went to Patel. He wasn't there but Patsy took our questions and was going to find answers for us when Patel returned in the afternoon. She had never heard the word "bulge" used as a medical term. She said his ears looked good but their was still fluid in them but that is normal when you have a runny nose. Which he still does. She wants to see him back Tuesday to check his ears again. She said they have seen a lot of ear infection cases do fine but as soon as the antibiotics stop they are back again. She wants to catch it before it gets out of hand.

His counts were up!! That was the best thing today. His white blood count shot up and platelets too. Patsy made a comment that the white blood counts were probably up because he was fighting an infection. So that means he has an immune system doing its job. Yeah!!!!

Patsy called this evening after she looked at the CT scan with Dr. Patel. Sure enough he said yes that there is a "bulge" but his NSE test has come back normal. NSE is Neuron-specific Enolase test. Patients with neuroblastomas may have high levels of NSE. Serum NSE can be used to monitor recurrence or progression of tumor in these cancer patients. Dr. Patel runs this test once a month. He has run it last Wednesday and we are waiting for the results for this month. This will tell us more if the "bulge" is anything. Patel feels that the disease is "stable". So he doesn't act to worried. Probably why he didn't tell us in the first place, because now I am a mess worrying about it all. Patsy said that the test should be back early next week. So only time will tell. Patsy reminded me that Austin has been through a lot of treatment so the "bulge" could simply be scar tissue. It is not necessarily cancer. Austin will have his scans done again in November. He will have another CT Scan and a MIBG scan done. This is a nuclear scan test that uses a radioactive material (radioisotope) that is injected into a vein. A scanner then detects the radiation in order to locate or confirm pheochromocytoma (an adrenal gland tumor). Austin had this done at the beginning for his transplant stay. The MIBG is very helpful with Neuroblastoma.

Austin is doing wonderful. He loves to play and is a very happy,sweet little boy. I am enjoying watching him grow. As he is not my little baby anymore. He is very independent now. It is so hard to believe next month he will be a one and a half years old!!!!

Please pray that this "bulge" is nothing and will continue to be nothing. We can only hope that we can keep this nasty beast away.

Have a good night!

Elizabeth