Last year (2000) my parents noticed that my left eye looked puffy. The doctor said it was a stye and gave me cream to put on it. It didn't go away.
November 2000: Met with Dr. Sam Goldberger (
http://www.neweyelids.com ) He said that it looked like a hemangioma and we scheduled an MRI. The MRI films showed the tumor above my left eye and pushing it down.
January 8th, 2001: Went to Children's Hospital of Los Angeles and had the tumor removed (see the operation report in the "Read This" page). It was sent for a biopsy (See the "Pathology report" on the "Read this" page).
January 16th, 2001: The doctor met with my Mom and told her it was a type of cancer called 'adenoid cystic carcinoma'.
January 23rd, 2001: Went and had a CT scan (also called a cat scan) of my chest, abdomen, and pelvs.
January 24th, 2001: Went and had a bone scan.
January 30th, 2001: Went and got the results of all of the scans and tests:
Blood test - negative!
CT Scans - negative!
Bone scan - negative!
Woo-hoo! I still have to have all of these tests done a few times or less every year for the rest of my life to watch to see if it comes back...but for now, I'm cancer free!
February 1st, 2001: May have to go to Boston for a 7 week radiation treatment to make sure that it doesn't come back. It will be 'proton-beam' radiation therapy. Look here
http://www.llu.edu/proton/patient/faq.html .
February 13th, 2001: Had another MRI.
February 14th, 2001: Went to Long Beach Memorial Hospital to see Dr. Cherlow and Dr. Ko. They said that the MGH and Harvard's Cyclotron is the best.
February 20th, 2001: (Madison's Dad says) We just got confirmation that we'll be going the second week in March. Madison, her sister and Mother will have to be there for eight weeks! The treatment lasts 7 weeks, but the first week is for 'fitting her to the machine'. Madison has to have a special mouthpiece made by a dentist that will hold her head still during the procedeure.
God has truly blessed us with friends and family that are able to help us financially. If it weren't for them, we would not be able to get this treatment for her. Those that helped with the lodging...I wish I could thank you more. In fact, I don't know how to thank you...you are helping to save my child's life...if it were legal to be a bond servant...I think I would be yours.
March 5th, 2001: (Madison's Dad) Ahhhhh! HMO's! Blah! Friday (3/2) they said that our referrals were ready to be picked up Monday (5th) and they were approved. So Dana calls to make sure they were ready and they denied them after they approved them! We leave in 4 days! They better hurry and approve these!
A side note on HMOs: They don't know how to say yes or approve anything. They automatically say, "NO" to everything thinking that you won't fight them. You can 'fight' with them and win almost all of the time. Challenge their refusals and ask lot of questions!
March 7, 2001 - 7:00AM: OK we leave in 2 days and the referrals still haven't been approved. We talked to the "Case Manager" for the medical group and they said that, "after all of their research, they have concluded that we do need to go to Boston for the treatments because it can't be done locally". Ahhhh! We told them that, we had 5 doctors tell them that, and we had notes from a few doctors telling them that! I guess that they just want to 'throw their weight around' and make it look like they are doing 'something'. They are doing something alright...MAKING US CRAZY! We'll see what the next few hours will hold.
March 8th, 2001 - 8:36AM: Dana calls me and says that one of the people where the proton therapy will be done said that the proton treatment will not be billed. I said, "What!? What does that mean?" She daid that they are not set up to bill anyone, only the procedures done at MGH (Mass. General Hospital) will be billed. WOW! This means that the most expensive portion of Madison's treatment will be free! Now we just have to wait on the approval of the referral.
March 8th, 2001 - 11:00AM: WOW, cutting it close! Dana calls me this morning and says that a nurse called and said that the proton therapy won't be billed (free!) and then an hour later...all referrals have been approved! Woo-hoo! God is great!
March 11th, 2001: We made it to Boston. What a long day(s) it was! Madison and I (Dad) got here as scheduled. Mom and sister were supposed to arrive about 3 hours earlier. Nope! They ended up getting here 5 and 1/2 hours later due to plane problems!
March 13th, 2001: I went to MGH and saw a doctor named Dr. Matt Jackson and got a bite-block made. When he put the mold in my mouth, it tasted like cinnimon & winter Altoids. It started to burn my mouth and I couldn't swallow with it in!!!!
After that, I went to see Dr. Liebsch. A very, very nice man. He told me all bout the radiation treatment I would get. When I got the simulation done, I was very scared. They layed me down on a table, attached my bite-block to a horseshoe shaped thing (see the picture in the Boston photo album), I started to cry and the Dr. tried to calm me down. They then moved the table around, up and down and side to side. Big red laser beams made a cross on each side of my face. At these crosses, Dr. Liebsch put permenant pen marks there. Then he gave me four 'targeting tatoos'! (poked me, ouch!) When we were done, Dr. Liebsch told me I was a very good patient!
(Dad says:) This was a very tough day for her and a very long one. It was hard seeing her connected to that table. She new why she was there, and what the alternatives are if she doesn't go through this.
March 19th, 2001: Madison's first day of treatments went OK. She did good, Mom said.
March 21st, 2001: Madison started her first day at the cyclotron. She was scared and a few tears were shed, but she was brave and things went OK. Madison and her sister get to go to the playground (Charles River Park) and play on the way back from the hospital (Mass General).
March 26th, 2001: The treatments are going as planned and the first sign of the 'radiation burn' is starting to present itself. She's got a stinging sensation next to her eye....like a sunburn. No redness yet on the skin, but her scar is a bit red.
April 9th, 2001: (Madison's Dad) I got to visit my wife and kids this past weekend...very nice to see them! Madison started her 4th week of treatments this week. Sh is starting to loose her hair in one spot on her head. Kind of scary, but it will grow back.
April 15th, 2001 (Resurection Sunday): (Madison's Dad) They sent me a digital picture today of the top of Madison's head. The bald spot is big and really made me weepy when I saw it. I know it will grow back and Madison doesn't seem to mind much. She made me promise not to show anyone so I won't post the picture until she says it's ok. Today, like all other days, I thank God for saving me, for the health of my family and for my friends. I also pray for all those afflicted with ACC.
April 19th, 2001 (Madison's Dad): Have you ever just needed some time to yourself? Everyone does once in a while. Well, I've had some time to myself. Almost 2 months worth now and I can honestly say...I'm quite done, thank you very much. I was done after the first few days alone. Madison and family are doing well in Boston. The treatments are moving along as scheduled. No secrets or suprises.
April 20th, 2001 (Madison's Dad): Well, Madison said I could post a picture of her with her bald spot showing. Look in the 'Boston' photo album. It's a good picture! Oh, and 14 days until I go back to get them!
May 4th, 2001 (Madison's Dad): Woo-hoo! I leave tonight to be with my family! Madison has her last treatment on Monday the 7th and we all come home on the 8th. It's been a long two months for all of us. Madison is doing well with ther treatments. She is starting to be a bit tired and have headaches once in a while but all is going as planned.
May 8th, 2001: We made it home! Treatments are complete! We have to see Dr. Goldberger to make sure the eye is healing then Madison has to have full scans in 6 months then once each year.
The story is 'on hold' for now...indefinitely, God willing. We will post pictures of Madison as she recovers.
Thank you to all of the well wishers and prayers. It has helped!
October 31, 2001: (Madison's Dad): We went to Dr. Goldberger (the surgeon) for a checkup. He said all was OK! Her eyelid may droop a little, but it's not a big deal.
Look in "Life Continues" !
