Well, Ai-Tan's health journey started about a year ago with an amazing need to drink large amounts of water. He would drink so much it would wake him up in the middle of the night to go to the restroom five to eight times per night. Of course at the time, we did not pay that much attention for this need of water. We even had gotten to the point of taking away his new Hydro flask water bottle in order to help control his water intake. We just thought that since he was playing computer games, he wasn't even paying attention to how much he really was drinking. But then, since I was monitoring his water intake, I saw that he was still using the bathroom just as much. We then decided to take him into the doctor's office. After several tests and referrals to different doctors we finally ended up with a diagnosis of Diabetes Insipidus (aka Water Diabetes). This is an illness that affects one in every 25,000 people, but it can be managed by medication which he has been responding to very well.
After getting the diagnosis of the Diabetes Insipidus we now needed to figure out why this had suddenly showed up. He needed to have many blood test with no diagnoses. Then they gave him his first MRI scan of the head and they finally found that Ai-Tan's Pituitary Gland was just a little thicker at the stalk with a small mass. Again, no cause for real alarm, but something we needed to watch continuously. Since finding this mass, Ai-Tan has gone into Children's Hospital of Orange County - CHOC (10 minutes from our house) every six weeks since December of 2019 to get an MRI to monitor this area of his brain. He has also had two Spinal Taps to test his spinal fluid and still they were not finding anything. With the sieres MRI scans of his head the mass continued to grow and we still did not have a definite diagnoses.
Our last resort to see what we were really dealing with was on Monday, June 29th, Ai-Tan went into CHOC to have a biopsy of this growth on his Pituitary Gland. At this time, Ai-Tan did not let us tell anyone that he was ill or even going into the hospital for this procedure. His reason for not telling anyone was because we didn't even know what we might be looking at and he didn't want anyone to worry before we had answers. He had this surgery performed through the nose by an ENT Surgeon, Dr. Jay Bhatt and a Neuro Surgeon, Dr. Michael Mahonen. Ai-Tan was in the ICU for three days and released on the fourth day but the surgery went better than I had expected.
We then waited for the results of the biopsy and on Tuesday, July 7th we found out that Ai-Tan has been diagnosed with Germinoma Cancer of the Pituitary Gland. So yes, Ai-Tan has brain cancer! But, at least the bright side of this type of Cancer is that it has a 90 % cure rate and we are very positive with the treatment and outcome since we have caught it at such a small size. Starting this Tuesday, July 14th, Ai-Tan will be admitted to CHOC for a few days to undergo more tests and start Chemo therapy. This journey will take us anywhere from four to six months depending how well he tolerates the medications. He will receive these treatments for three days then wait for 21 days. They will be monitoring his blood constantly and if everything is where they need to be, then they will start another round of Chemo. His treatment they say is for a total of four cycles. At the end of the Chemo Therapy he will undergo Radiation Therapy. Ai-Tan has been doing a lot of his own research on treatments and has expressed an interest into the Proton Therapy instead of Photon Therapy. We will wait for the insurance company to see if we have the approval for the Proton Therapy Ai-Tan is interested in. This treatment is not available at CHOC and our options for the location will probably be in San Diego at the Rady Proton Therapy Center. We will be having a consultation with them on August 4th to learn more.
We appreciate all of your concern and know that all of you care, but we ask that during this time to please keep all calls and texts to a minimum on our phones and to post all messages here for us to respond to you when we have a quiet moment. The other benefit in using this website is that Ai-Tan will be able to read everything gathered here on this page when he needs strength and to know that all of you are here for him. Originally, Ai-Tan did not want me posing anything on Facebook but as we are dealing with his Cancer more I can see that he is becoming more accepting of it and how to deal with it. When I see him explaining and talking more with people, I now see a determination and power that wasn't there before. Don't worry, this guy is going to beat Cancer! He told me, "Mom, don't worry.....I got this!"......I believe him!
Anna-Marie
Money/donations/tributes are not needed to use this page. The money would be going to the Caring Bridge Website and not directly to Ai-Tan. A tribute is not needed
----------------------------------- Diabetes Insipidus is an uncommon disorder that causes an imbalance of fluids in the body. This imbalance makes you very thirsty even if you've had something to drink. It also leads you to produce large amounts of urine.
Spinal Tap is the removal of fluid from the spine in the lower back through a hollow needle, usually done for diagnostic purposes.
A Germinoma is a rare form of cancer that is most often found in the brain of children between the ages of 10 and 19 years. The cancer originates in germs cells, which are actually sex cells that fail to leave the brain when the fetus is still in utero.
The Pituitary Gland is a small, bean-shaped gland situated at the base of your brain, somewhat behind your nose and between your ears. Despite its small size, the gland influences nearly every part of your body. The hormones it produces help regulate important functions, such as growth, blood pressure and reproduction.
Photons Therapy - vs - Proton Therapy - Photons pass through the cancer and out the other side, so in this exit, they hit normal cells and tissue. Proton Therapy, on the other hand, stops at the tumor. There is no exit dose.... "The side effect they can cause are similar, but with Proton, less does goes to normal cells, and that is the benefit." --------------------------------
I thought I would give you all a little update since we have reached and have past our 1 year mark of when we found out Ai-Tan had Cancer.
Ai-Tan has continued to have MRI scans of both his brain and full spine every 3 months since his treatment ended back in November. He just had his last MRI on July 28th and we still have nothing new to report.....nothing has come back.....everything is good and as it should be! Such good news, Woo Hoo! We will have appointments with both his Oncologist and Endocrine doctors next week just to go over all the new scans and to make sure his medication is ok for his Diabetes Insipidus (DI). He did have a hearing test a month ago and everything is perfect. They will continue to monitor his hearing because they said that medication he took during Chemo can cause hearing issues in some patients and can show up after treatments are finished.
I still can not believe what he went through and just how well he handled everything. He never changed or dropped his IB Classes, his grades were off the charts, his tennis was great, he only missed 2 full days of school, and his attitude was always positive. Well, here we are getting ready to start school in just a few weeks and this guy is in full steam. Ai-Tan is the School Representative to the District (I hope I have the title correct), he's busy with planning all the school activities with ASB kids, and now going to try and fit in a little cram session for SAT testing. Of course he wants to try for some schools that will still require the SAT tests and he wants to bring his score up. We managed to have him take one SAT test during his treatments (yes, let's just take a major test when we aren't are best, Ugh) He just wanted to see how he would do taking the test cold and without studying. Probably he also just wanted to be like all the other kids and forget for awhile his current situation. Ai-Tan is hoping to find and get admitted to a 7 year medical program....or just on the right path to Medical school.
Well, let's see how this year goes, but for now Ai-Tan is being Ai-Tan! Driving me crazy, lots of energy, and as usual I'm trying to keep up with him. Love him so much!
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