Will began Kindergarden this Fall. He loves school, his friends, his teachers. Again, we were taken by surprise.
12/03 Tumor has recurred.
12/03 Surgery at TCH
2/04 Radiosurgery at Anschutz
3/04 Chemotherapy begins. William is taking tamoxifen(100mg) and etoposide(50mg). He takes them daily for 21 days, then has a week off. The tamoxifen comes as 5 little white pills, and the etoposide is a single, large capsule. Will learned to swallow them quite easily. He is a pro now.
I apologize for the layout here. To read the story chronologically, please scroll to the bottom and read from the bottom up. When I originally entered these updates, I always added to the top so that our readers would see the latest info first. Now it seems a bit strange, but it is too much for me to go back and change. Thanks for understanding.
9/21/06 Not good news today. The tumor has recurred. Same place, fourth ventricle in the brain. Friday will be an MRI of complete spine to see if it has spread. Monday is a spinal tap for same reason. After clean reports, neurosurgery will be scheduled. Lump is fairly small, think size of pinky fingernail, and would be an "easy" surgery, if not for all the previous scar tissue and radiation damage.
3/2006 No tumor!
8/15/05 Good news: no tumor. Another quick scan, 25 minutes and he was out of there! Swelling is still there, but Will seems to be dealing with that just fine, thank you very much. Dr. Foreman is still amazed that William is writing right-handed. We have had a wonderful, busy summer. Will attended a week long soccer camp at CU. It went from 9am to 3pm every day. Patricia attended a dance/cheer camp for a week. They both attended VBS for a week in July. We visited Aunt Barb, Uncle Dave and Jordan over the July 4th weekend. AND we spent two weeks vacationing out West: Lake Powell, Great Grandma, Aunt Fern and Paula in Los Angeles, San Francisco, the Northern California coast, the Redwoods of California, Grandma and Grandpa in Reno, the Tahoe City Milners, and the Truckee Milners. Whew! Second and third grades: here they come!
A side note: It's been 5 years since Will's first surgery. Every day has been a blessing. Not all have been easy, but with prayers and help from you, our friends, we have not only survived, but thrived. Thank you for everything. As our Lord has blessed us with your friendships, we ask Him in return:
The Lord bless you and keep you! The Lord let His face shine upon you, and be gracious to you! The Lord look upon you kindly and give you peace! Numbers 6:24-26, NAB
4/5/05 No signs of tumor! William had his three month checkup today, complete with MRI. It was one of the quickest scans he's ever had - only took about 25 minutes. He was very still in the scanner and very cooperative during the contrast injection.The swelling is still present. It does not seem to be resolving itself too quickly, but Dr. Foreman is not overly concerned about it. Overall, Will is doing great. His grades are good. His ITBS scores were great. He is on a soccer team again - their first game is Saturday, April 9th. His hair (still hidden under a cap) is gorgeous soft curls that most females would almost kill for. He doesn't like the color, a light brown, or the curls. He has a heart of gold. After today's scan, the technician let him choose some stickers. He picked a couple "Incredibles" for himself, then insisted on two "Bratz" stickers for Patricia. What a sweetheart!
1/11/05 Three month MRI and check up this morning. NO SIGNS OF TUMOR! Swelling is still present and there is damage to the right side of the cerebellum. Apparently we humans are very good at adapting to this sort of situation. Dr. Foreman was a little surprised when Will informed him that he is right-handed, but said that this does happen. He is quite happy with William's state of health. Will has come through all his trials with very few side effects. He is a first grader this year, and he enjoys his class and friends. He loves to read and play soccer (and Gameboy), and he is quick to add and subtract numbers. Although he is still wearing the hat, he has a full head of hair and may need a trim soon. As we left Children's early this afternoon, we offered Will a a choice: We would eat lunch at his choice of burger joints, and then we would either take him back to school (for the hour that would be left) or we could go directly home for the day. He chose to go to school! What a kid.
10/10/04 Follow-up MRI today. No tumor, but the swelling is still present. Will's hair is coming back. He still insists on wearing a hat - his favorite is the CU hat received from his 5th grade buddy at the end of the last school year.
8/17/04 William had an MRI of the entire spinal column this morning. Good news- the swelling is localized at the top of the spinal cord and there are no signs of tumor down the column. He will visit the doctor every two weeks so they can keep an eye on him, then he will have an MRI in about two months to check on the swelling. Rejoice!
8/16/04 Another MRI to be thankful for. There are no signs of tumor growth. While this is good news, there is now a worry about swelling of the spinal cord. This MRI showed swelling where the spinal cord enters the brain. This area did receive radiation, so this is probably a reaction to the radiation. This is not uncommon 6 - 9 months out from the radiation treatment. William will have another MRI tomorrow morning to examine his complete spinal column. This will give the doctors an idea of the extent of the problem. We will discontinue the chemotherapy until the swelling has subsided, probably about 2 months out. In the meantime, his hair should grow back. Yay! AND just in time for school which starts next Monday, August 23rd.
6/9/04 All is well! We "give thanks to the Lord for He is good"! Dr. Foreman is quite pleased with William's status. His scans looked good and his blood counts are back up in the normal/safe ranges. Will is quite the little soldier these days: no Emla(numbing cream) prior to the "poke" and no tears during the blood test or setting of the I.V. We treated him to a trip to WalMart afterwards where he picked out a package of YuGiOh cards and a case for them.
6/8/04 William is scheduled for an MRI tomorrow, June 9th. This is part of the protocol for the clinical trial he is participating in. He has finished three months of oral chemotherapy at this point. Just last week his blood counts dropped to levels low enough to concern us. Thank goodness he is out of school now. His spirits remain high and, other than the hair loss, people who don't know him have no idea what he has been through. He is just a normal kid until you look under his hat.
6/2/04 William has graduated from Kindergarden!