To read this chronologically, please scroll to the bottom and read your way up. When I began putting this website together, I put the most recent entry at the top of the page so our readers could see the latest news right away. Not so great now, but it seemed like a good idea at the time.
2/20/2008 Bad news. The tumor has recurred. This is the fifth occurence or the fourth recurrence, depending on how you want to count these things. We left the appointment in two cars. Will and Jim went off to do some landlord work. Michelle headed home to pick up Patricia. Later in the evening we discovered that William was not really clear on the findings of the day. When informed that the tumor was back, he was mostly upset about missing school to have the surgery. He asked if the surgery could wait until Spring Break so he wouldn't miss school.
11/2007 Will's MRI was clear. We are thankful indeed. He will stop taking the tamoxifen. That leaves just two pills per day, the Gleevec. Did I ever mention what our copay is for this drug? Whew! is all I can say.
8/15/2007 William had another clean scan this morning. We are thankful for one more miracle. It has been a busy summer. We made a trip to the four corners area and visited Uncle Mike, Aunt Di, and cousins Maddie, Sidney, and Peri. We stayed with Aunt Kelly and Uncle Ed while we were there. They treated all the cousins to a day on the lake where all the kids got to try waterskiing. We also toured Mesa Verde. After a couple days at home, we headed to Mankato, MN, for the 9-ball National Junior Championships. We met up with the Beutler family who have 3 boys, 2 are also playing pool. Will, Matthew, and Ryan all did well at the tournament. The next week found us in Osh Kosh, WI, with the Beutler family for the EAA Airventure! We camped under the trees, walked miles every day, saw tens of thousands of airplanes, and were joined by Uncle Jack and a friend, Ron, from Columbus, OH. Another friend from our church also joined us in tent city with his dad for a few days. We had 13 people in 4 tents in our little area. We treated the kids to a couple days in the Wisconsin Dells, famous for outrageously huge waterparks. All in all, I think we had a ton of fun.
5/2/07 A clean MRI + good measurements on the echocardiogram + a good checkup = A GREAT DAY IN THE WILLER HOUSE!Can you tell we've been doing word problems in math? Will has a week off the meds now. He is enjoying soccer, and even scored a goal in their last game. One more round of meds will include the etoposide, then he will be down to 7.5 pills per day.
4/26/07 William is about halfway through round six. He only completed half of round five before coming down with a bad cold that turned into pneumonia. He was off the meds for about two weeks to help with his recovery. Since then his pool league finished up with Will in 5th place. His soccer season has begun, and school is 5 weeks from getting out for summer. His hair is coming in nicely. He is hanging out at home without his hat, and he plays soccer without it. He still wears it to school and out and about. May 2nd is the next big appointment. He is scheduled for an MRI, an echocardiogram, and a regular checkup.
3/3/07 Just started round 5. Seems like Will's hair is coming back in. It's a very soft, fine fuzz. Something new in our schedule is the pool league that William has joined. Every Sunday he plays at Noon at the Wynkoop in downtown Denver. There are 8 boys involved. Will and his friend Matthew are the youngest. The other boys are 12 - 17 years old. They are all very nice kids, and have been very helpful and kind in helping William learn the game of 9-ball. He loves the game, especially if it means beating Dad and Mom in practice at home. Our snow had finally melted, for the most part, then we had more fall this week. We are seeing more of the sun, so we have hopes that spring is going to put in an appearance one of these days.
1/31/07 Whew! The MRI was clean. Will has the "go" to start round four tomorrow.We thank our Lord for this bit of good news and your friendship and prayers. Our strength is of the Lord and your prayers. Now if it would only stop snowing for a week or two and warm up a little bit...
1/29/07 William is in the middle of his "off" week. He has now completed three cycles and was somewhat tired at the end of last week. Wednesday, January 31, is the next MRI. We've had a snow storm every week since that first one before Christmas. There are piles of snow, sheets of ice, and lots of white everywhere, still. It's definitely a winter wonderland.
1/4/07 Happy New Year! William has completed two cycles and is beginning the third one tonight. He is doing well. The kids enjoyed the Christmas vacation tremendously. We had two huge snow storms that left amazing drifts for us to play in. I've added a few pictures of the snow activities. We went sledding one day, and I'm sure that God was tired of hearing me ask Him to keep Will safe for one more run down the hill. Will decided that he liked to "catch air" over the bumps. His birthday party had to be rescheduled due to the first storm. Then the second storm began the day of the party. The kids played a VERY fast game of miniature golf as it snowed. What fun!
12/19/06 Will completed one full cycle of the drugs before his counts dropped too low. He restarted the routine a couple days after he was originally scheduled to do so due to the one week of low counts. He is now mostly bald - just has a very fine, downy covering left, so... the hats are back in action. He wears our St. Louis school hat to school and various others outside of school. The kids are out of school and having a blast. William will be 9 years old on Saturday. He will host some friends at Boondocks on Thursday for three hours of laser tag.
11/19/06 William started the chemo routine on Monday, November 6th. He is doing well with it. He takes 7.5 pills each morning and evening. As of today, he still has his hair. I think it is just beginning to thin. He had a checkup Wednesday that included a baseline echocardiogram and a CBC (complete blood count). The echo was completely normal, which was the expectation since he just started the meds. (By the way, that's what Will calls them - meds.) The blood counts have dropped a little, but are still in the acceptable range. He will have weekly checkups and blood draws while doing the chemo. William had a concern that he voiced to Dr. Foreman on Wednesday. He said that he felt dizzy when he backed up to catch a football, and then he fell down. Dr. Foreman explained that the brain was still healing from the surgery, and as Will does more activities, he may notice some problems even though he feels fine. I'm sure the doctors sometimes wonder how smart these parents are when they let their kids play football in the park one month after major surgery...
10/30/06 Well, it seems that the more things change, the more they remain the same. William had the MRI this morning, then an appointment with Dr. Foreman. Due to the fact that the tumor resection (removal) was completely successful and there are no remnants of the tumor, he is ineligible for the clinical trial. We were presented with the option of using the same medications, but not participating in the trial or doing something else. Dr. Foreman has looked at the most recent tumor in his lab. This tumor has extremely high expressions of PDGF (platelet derived growth factor) and Dr. Foreman has a drug that targets PDGF. So... we have decided to follow his recommendation to go with an oral routine of VP-16(etopiside), tamoxifen and gleevec(the drug that targets PDGF). Will will have a complete blood workup done on Thursday, and is scheduled to begin the routine on Monday, November 6th. The plan is to take VP-16 for a maximum of 6 months(side effect is risk of leukemia if used longer), tamoxifen for one year, and gleevec for an indefinite (longer) time. Gleevec side effect is risk of heart disease (1-2%), so followup will include an echocardiogram every six months, in addition to MRIs every 3 months. If the tumor comes back, then we will try the other drug combo prior to opting for surgery.
10/27/06 William has been accepted into the clinical trial. He has an MRI scheduled for Monday morning, as well as a checkup with both Dr. Foreman and Dr. Gore. We don't yet have a date for the surgery to place a port, but expect that it will be next week sometime. Monday, November 6, is the date being discussed as the start date for the chemotherapy. Will continues to heal. The only remaining challenge seems to be his handwriting, which has suffered considerably. His class is learning two new letters in cursive each week, and he finds it rather difficult.
10/14/06 William and Jim are out selling Cub Scout popcorn. William is about $500 away from his goal. He has had a good week overall. Monday was Columbus Day, so no school. He attended school each morning on Tuesday and Wednesday. Thursday he went from his doctor appointments to class in the afternoon. Friday he attended all day. He is quite the trooper. One mom told us that she saw Will at lunch "running and playing" as though he had not had neurosurgery last week! We are still giving him Tylenol and ibuprophen.
10/13/06 Today Jim and Michelle met with Dr. Lia Gore and her assistant Molly. Dr. Gore is in charge of the clinical trial in which Dr. Foreman suggested William participate. This is a phase one trial, phase one being the most experimental phase of trials. However, both of the drugs being used are FDA approved for use in adults. This trial is testing their usage in children ages 2 - 18. The drugs are cetuximab and irinotecan. Irinotecan has been used for about 30 years, mostly to treat colon cancer. It is a chemotherapy drug. Cetuximab is a monoclonal antibody that has been in use for about 2 years. Basically, it binds to proteins on the surface of cancer cells and attacks them. The regimen is a six week cycle of Monday through Friday I.V. drug administration with the 3rd and 6th weeks being Monday only. Mondays are longer days; Tuesdays through Fridays would only be 1.5 to 2 hours. Side effects do NOT include the loss of hair, and most side effects are fairly mild. William would need a central line or access port installed in his chest to accomodate the frequency of I.V.s. He should be able to attend school and participate in scouting and other activities.
10/12/06 William had a post-op follow-up appointment today. From Neurosurgery, he was checked by his friend, Jane Freeman. The two of them giggled through most of the checkup. The wound is healing well, and his reflexes/coordination are all returning. From there we headed up to Oncology where Dr. Foreman was also happy to see Will's progress. Will spent some time playing XBox while we talked with Dr. Foreman about future treatment options. Radiation is out; William has received a lifetime supply of radiation. While there is no known cure at this time, there is a clinical trial which holds promise. We will meet with the trial team tomorrow for further information. We are encouraged by the knowledge that William's doctor is on the cutting edge and on a first name basis with all the names we have come across in articles and on the internet with regard to the topic of ependymoma. We continue to pray for him and his team to find a cure, not just for William, but for all the other kids out there.
10/5/06 Breakfast was a hodge podge of items. One of the doctors told William that he could leave as soon as he could walk to the elevator. William spent a little time in the playroom testing out the XBox and PlayStation. By about 1pm all the paperwork was in order and we were on our way out of there! We made a stop at Game Stop to look for a new game for the Gameboy, then we headed home. And here we are! Michelle is taking the kids to meet Aunt Kelly tonight at the Arvada Center to see James and the Giant Peach. William does not want to pass on this outing, so we'll see how the evening goes...
10/4/06 Will had bacon, a half banana and Sprite for breakfast. By 9am he was in MRI again. The scan showed no residual tumor - hooray! He had the night shift remove an IV line and the catheter early in the morning and the day shift removed the arterial line and oxygen. Lunch was part of a grilled cheese sandwich and (what else?) Sprite. He was moved up to room 526 late in the afternoon. The dinner that was delivered to the room was not quite what Will was looking for, so Jim brought a hot dog to him. Will ate the hot dog, mandarin oranges, Sprite and a KIT KAT. Our room was a little busy, so he didn't get to sleep until about 11:30pm. They let him sleep all night.
10/3/06 We arrived at the hospital at 10:30am to go through all the admission stuff, which is very streamlined at Children's. Everything started at about 1:30pm instead of 12:30. We walked down to MRI with William and were there while he went to sleep. By 3:30 we received an update that the actual surgery was just beginning. At 5:30 Dr. Foreman visited with us. He had a piece of tumor tissue ( in a very special -180C container) that he will send out to have gene checked. At 6:30 we were informed that they were closing/finishing. A little after 7pm, Dr. Handler (surgeon) came out and said that all was well. The anesthesiologist was out at 7:30, and we went to see Will in Recovery at about 8pm. By 9pm William had moved to PICU where he watched a Benji movie and drank Sprite and ate Saltine crackers. He was awakened every hour through the night for vital signs.
9/28/06 The surgery has been rescheduled to Tuesday, October 3rd at 12:30pm. We will arrive at Children's at 10:30am. He will spend Tuesday night in ICU and be moved to the 5th floor whenever his recovery allows it.
9/26/06 The path is clear for surgery. The spinal tap was clean. Will is such a trooper. He had anesthesia, so he slept through it AND they did a blood draw for the labs for surgery. That's one poke he didn't feel. He has a pre-op appointment on Thursday, then surgery on Monday, October 2nd. Dr. Michael Handler is Will's neurosurgeon again. We will arrive at Childrens at 6am, and surgery is scheduled to begin at 7:30. Other notes: Dr. Foreman is Will's pediatric neuro-oncologist. Dr. Foreman heads up one of only three centers GLOBALLY that study ependymoma. We are certainly blessed to have him right here in Denver. He has taken one of Will's prior tumors out of storage and studied it some more this week. He has found that it "expresses" erB3 for the most part. Now he is deciding what to use to "target " that expression or receptor on the tumor cells that is causing them to grow so quickly. We pray that he will succeed in this, thereby helping not only William, but the other children plagued by this nasty form of tumor.
9/22/06 A bit of light in the darkness! The MRI of the spine was clean today. The plan for the spinal tap remains on for Monday. Tuesday we will meet with the neurosurgeon. Surgery is scheduled for Friday.
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.