Most recent entry at the top. To read chronologically, please scroll to the bottom and read your way up. Thanks!
August 18, 2009 ALL CLEAR! Two little words that our world seems to hang on for a day. Then we're back to the everyday scramble. It seems as though there is a lot of homework in middle school this year. Will is attending full days, and Patricia is enjoying 7th grade. She is awesome at helping Will with things since she is an old hand at it now.
SUMMER WAS AMAZING! Will has a new bike. It's way cool, and I need to get some photos uploaded so you can see it. He had infusions every other week all summer long. June included a week-long computer camp where Will learned how to program computer games. We visited Bayfield, CO, and Granbury, TX, over the week of July 4th. At the end of July we headed to Osh Kosh, WI, for a week at the big EAA Airventure. Grandma and Grandpa drove out in their motorhome, and we all had a good time. Will bought a neat little RC airplane that he flies whenever the winds die down. After just a couple days at home, the family headed back East again for Aunt Betty's 80th and a side trip to Minneapolis to pick up a motorhome. (What!?!?! Just call us and we'll tell you the story.) Of course, it went WAY too fast, and now we're back in school gear.
5/18/2009
Wahoooooo! Clean scan today. Scanxiety relieved. And on with life. School lets out at the end of next week. I think we are all ready for Summer.
Will had an eye appointment early this month. Continued improvement. His vision in the right eye is still awful, but the surface of the eye is healing. We will go back in September to check it again. We discussed the Avastin infusions with Dr. Foreman today. It is our intent to continue treatment another six months for a total of one year. The latest news is that Avastin has just received official FDA approval for treatment of GBM tumors, another type of brain tumor.
I need to upload some recent photos, so check back soon for more. AND thank you for your continuing encouragement!
3/2/2009
We got the all clear - no signs of tumor today! Hooray! The new North TCH building is very pleasant. It was not busy while we were there, and we even saw a familiar face. Dave, in MRI, has been doing Will's scans for years. Now he's up at the North outpost. We chatted with Dr. Foreman at the Aurora TCH while Will was getting the Avastin infusion. He was happy to report the good news. He was also happy to see Will's eye finally healing. Speaking of which, that appointment is Thursday, not Tuesday. So we hope Dr. Davidson is also happy with the improvement.
Many thanks for the kind notes of encouragement you sent.
Blessed be the Lord, who has heard the sound of my pleading. PS 28,6
3/1/2009
Wow, another two months have flashed by us. Will began the Avastin only infusions as scheduled on January 12th. Then he had to skip the 19th because he had a kidney stone and UTI. Instead of spending part of the afternoon at Children's, we spent the day at Avista in the Emergency having this diagnosed (confirmed) and treated. Actually, the only treatment was for pain management and an antibiotic for the infection. He passed the stone(s) on his own.
Will's eye is finally healing. After seeing the eye doctors almost weekly, we had a full month off. He is scheduled for an eye doctor visit Tuesday, along with an MRI and Avastin infusion Monday. So, it's a busy couple of days. This will be his first MRI at the new Children's facility on Highway 7 just West of I-25. After the MRI we will head down to Aurora, to the main campus, for the chemo and consult with Dr. Foreman.
We will post an update after receiving MRI results...
1/6/2009
Happy New Year! Looking back at the last two months, it’s hard to remember everything that has taken place. I will try to get you all caught up on our happenings…
In November we were busy with PT, OT and eye appointments. The right eye has a sterile ulcer that just won’t heal, culminating in another tarsorrophy the day before Thanksgiving. That’s where the eyelid gets a stitch or two to close it and allow the eye to heal.
December began with chemotherapy on the first. Will received Avastin and Irinotecan. Avastin is a monoclonal antibody, while Irinotecan is a traditional (ie nasty) chemo drug. Will felt the effects pretty much immediately. He takes Zofran for the nausea and good old Imodium for the other.
If you take a look at the calendar on the website, you’ll notice that we were still busy with a number of other appointments until the middle of the month when we dropped PT and OT from the schedule. The therapists said that he was wearing them out. We were still dealing with the eye, however. Christmas Eve found us at Children’s at 6am for another eyelid surgery. This time Will’s right eye was permanently stitched closed from the outer corner to the edge of the cornea. Hopefully this will allow the eye to heal and protect it in the future.
Back to the chemo – it’s a three week schedule with Will receiving both drugs the first week, just the Irinotecan the second week, and nothing the third week. Will had two rounds of this before he insisted that he was done. He was feeling “yucky” all the time, couldn’t sleep, and started to lose his hair. We set an appointment to talk to Dr. Foreman on January 5th about Will’s concerns. Dr. Foreman said there is not a huge difference statistically between therapy with both drugs and therapy with Avastin alone. The new plan is to go with Avastin every other week beginning January 12th.
Will also celebrated his 11th birthday on December 23rd. He had a sleepover with a few friends early in the month. I’m glad we did it then, because by the end of the month the chemo had wiped him out. He was not interested in attending parties at friend’s houses and was doing a lot of reading.
Moving forward, Will is using our Wii-Fit to work on his balance issues. He is determined to get back to pre-surgery abilities. Sometimes he gets frustrated, but he always presses on. He still has his sense of humor. Sometimes he cracks a comment, and I know he is looking at me, just waiting for my reaction. We love to laugh together.
11/5/2008
It's been a couple weeks since our last update, and Will is scheduled for an MRI tomorrow. We are looking for surgical swelling to be diminishing and confirmation of gross total resection (GTR). We ask for your prayers as every MRI is stressful for us.
Will continues to recover from the effects of the last surgery. He is not using the crutch and is attending half days at school. His eye has healed from the insertion of the weight in the eyelid. He is trying more foods and is scheduled for an official swallow test, a flouroscopy, on November 17th. PT and OT are part of the weekly routine.
Halloween was fun for us. I will try to get some photos posted. Will and a friend were "hippies", complete with tie-dye shirts and wild hair. Popcorn sales are all wrapped up. Thank you to all who ordered from Will. It looks as though he will be tops in his pack again this year with over $1500 in sales!
10/12/2008
Wow! It's hard to believe that it's been two weeks since our last update. We have, of course, been busy. Will is attending half days of school, and he continues to "catch up" on all the missed assignments. His teachers, Mrs. Brick and Sister Charlene, have been super about helping Will and giving him lots of encouragement.
Will is now a regular at the therapy center. He attends PT twice each week and OT once each week. We are seeing lots of improvement. He is using the crutch at school now - he ditched the wheelchair last Tuesday. He is walking much straighter lines these days. He is doing PT "homework" with a theraband and a big 65cm therapy ball. He is expanding his diet and seems to have less trouble swallowing. He can't wait until he is cleared for popcorn and McDonald's cheeseburgers.
Last week was supposed to be an easy week with no trips out to TCH. Well, you can guess what happened... Tuesday I picked him up from school and headed over for PT. I noticed that his eyelid with the stitch was looking inflamed, so I called the eye doctor. Dr. Hink wanted to take a look, so we drove out to Aurora. Yes, it was good that I did that. Will had the stitch removed to ward off any chance of infection. That meant that he needed the weight in the eyelid, pronto. So, that was scheduled for Friday at 3pm.
Of course, Friday was Patricia's birthday, and she had eight girlfriends scheduled to arrive at 5:45pm to spend the night. Hmmmmm. Thank goodness we know a lot of really nice people! Our neighbor, Elizabeth, and her 2.5 year old daughter came to the rescue. They got the party started and even did the dinner dishes. Thank you!
So, the surgery went well. We were home by 7:30pm. Will even gave the girls some pointers on how to best play RockBand on the Wii. We spent the rest of the weekend recovering, doing homework, visiting friends...
And that brings us to the final week of popcorn sales. If you have already ordered, THANK YOU! We plan to pick up our "corn" and deliver this weekend. If you would like to place an order, there is still time to let us know. You can also order online at www.orderpopcorn.com. Will's "order key" is TEJ7RVQ. He will receive credit for any online orders, the popcorn can be shipped anywhere you like.
9/28/2008
Yes, it's that time of year.... Cub Scout popcorn sales! As many of you know, Will has been a top seller in his pack every year. This is his final year in the Cub program. He told me he doesn't think he will reach the $2500 mark this year, but he has picked out a couple prizes he would like to earn. He needs to sell $1700 to reach his goal. So, if you like good popcorn, please take a minute to look at the attachment. If you would like Will to call you for your order, just drop me an email with your phone number. You can also just let him know by email what items you
would like to order. We will deliver if you are in the Denver area. We can also ship to you.
It's been a good week. Will attended school every morning and left at lunch time. He had an appointment with the eye doctor on Wednesday. Since the right eye is still not closing all the way, the recommendation is for a weight to be placed in the eyelid to help it close. That procedure will probably take place sometime mid-October.
Will started PT on Thursday. He won't admit it to me, but I overheard him telling a friend that it was kind of fun. He now has a crutch (in addition to the wheelchair and walker). It takes a fair amount of coordination to make it work correctly, so he has been practicing as we search for new bedroom furniture. We also spent time every day trying to catch up on schoolwork. We are hoping that he will have completed all the previous assignments by next week.
9/21/2008
Happy Sunday!
Wow, what a busy couple of days... Will went to school Friday morning and left at lunchtime. He was greeted happily by both students and teachers. He used his new laptop (he paid for half of it, and Jim found a great deal) to do some of his schoolwork that afternoon. We enjoyed Friday evening at the Wyton's with the Beutlers. The dads and the kids went over to Erie H.S. to watch the Erie v. Holy Family game for a while.
Saturday saw more schoolwork completed, as well as some "hang out" time around the house. Today was a big day because Will went to his first Broncos game with Jim, courtesy of friends (The Romans) who have season tickets. Thank You, Nick! Patricia and I got to hang out together, so we went rollerskating at Skate City and to a movie.
Plans for this week include half days of school, PT on Tuesday and Thursday, and an eye appointment on Wednesday. Plus more catch up schoolwork, of course. It is easy to see when Will is tired - he starts to trip over his own feet and leans a little further to the right. He is building strength - standing for longer periods and doing more walking. His eyes seem to be tracking better, though the right one still does not close all the way when he scrunches his eyes closed. He is eating a lot better and trying new foods. He seems to be handling the swallowing a lot better, though there is still room for improvement.
9/18/2008
We're home! Hooray!
Four wagons to get all our stuff out of the room, but we eventually did it. Jim's truck ran out of gas before we even got out of the parking garage, so we had to make a gas run too. Then we were on our way. Will decided that he needs a laptop to help do his homework, so he and Jim made a number of stops along the way, looking for the best deal. They eventually picked one and arrived home around 4:30 or 5pm.
We are planning to have Will go to school for a half day tomorrow. I will hang out in Louisville, just in case... We will let you know how that goes. Probably not so many updates now that we are home. Thank you all for your notes of encouragement and helpful ideas. I don't want to imagine going through anything like this without you, our friends.
9/15/2008
That cake that Will made in therapy over the weekend was really good! He shared it with the rest of us, some of the nurses, and a couple other
patients on this floor. Sunday is an easy day with only one PT session, so Will was able to relax. We had visits from cousin Jen & Nate, Sam & his
Mom, and Stan & Jean Buck, as well as Grandma, Grandpa & Patricia. Will is starting to cruise around his room without a walking aid. Jim and I
have been banished from the bathroom when nature calls him, and we are taking that to be really good news.
Today was back to the busy routine of 2 sessions with each: PT, OT & speech. Will is definitely walking short distances now. He is feeling good
about it too. Mrs. Brick stopped by during a time when Will was between therapy sessions. She helped him complete a few school assignments. That
was a HUGE help, since we are starting to worry about the backlog of school work that will be waiting for Will. Michelle went home to try to do some
bookkeeping for Jim, and Jim left the hospital for a while too. Grandma and Grandpa were available to hang out with Will for the afternoon and
evening.
We found out that Cub Scout popcorn sales start this coming weekend, so Will and Jim have already started to talk strategy. Watch out!
9/13/2008
It's Saturday evening, and Will is doing some homework. He finished three pages of math today, now he is reading. During PT he baked a
cake. Tomorrow he will frost it, then he hopes to be able to eat it. Yesterday included almost 5 hours of therapy! Talk about working
hard.
Today we had visits from Sister Charlene and Michael Hodge (accompanied by mom, Debbie). Another person surprised us with a visit:
Tommy, the child life specialist from oncology stopped by. She has always been able to coax a smile out of Will. No change there. She
left promising to return with some silly string, but couldn't find any. So she came back with a big Nerf dart gun that shoots darts up to
30 feet.Wow!
I also had a very interesting email yesterday from a group of ependymoma parents. Check out this link:
http://www.medicalnewstoday.com/articles/120991.php
9/11/2008
It's amazing what can happen in a couple days. Will is doing lots better. He is standing on his own and playing Wii games for up to 15 minutes at a time. He
is beginning to take more than just a couple steps without the walker. He is starting to use his right hand a little more. He read almost half of a chapter from
a book his class is reading in school. Last night he said that he could feel the eye drops I put into his right eye.
We had the big meeting with his rehab doctors and therapists today. They all agree that he is making progress. They feel that if he stays and continues to
do this well, he will go home on September 19th with a high degree of independence. They are suggesting that his first week back at school be half days to
help build his endurance.
We had a huge surprise yesterday when Kathi B. and her son, Matthew, came to visit. They brought gifts from the K Foundation, part of the K Financial
Company in Louisville. There were movies and games for the PSP, a games for the Wii, Dance Revolution for the Wii, and Rock Band for the Wii. Will said,
"Holy Buffalo!" His therapist had assigned "homework" of standing and playing a Wii game that evening. There was no difficulty with completing that task. The
Giles family also visited, so Will had both Matthew and Sam to help him fulfill that request.
This afternoon we set up part of Rock Band. It is SO GREAT to see Will standing up and strumming the guitar. He is working on balance AND he is moving
his right hand - not an easy feat after this last surgery. He wants to set up Dance Revolution tomorrow with his therapists. I see a funfilled weekend ahead
of us, so be sure to stop by if you are in the area...
9/9/2008
Tuesday night, checking in... Lots of therapy going on. PT, OT and speech twice each day. Plus we had a doctor stop by who specializes in
"reintegration" into school. He was very happy to hear that Will has had lots of classmates visiting, so they know what is going on. We were
told this afternoon that our team is recommending that we spend another week getting this intense therapy routine. They believe that Will
would leave the hospital totally independent if we go that route. We will have a big team meeting on Thursday to discuss progress.
I was disappointed to think about not going home this weekend, but I was heartened by their belief that the extra time would result in
independence. With his abilities where they are now, I was considering spending the days at school with Will to assist along the way. It
would be nice if that was not necessary.
His walking (with a walker) is improving, but we all still feel the need to follow along behind him. His balance is not quite all the way there. He
is only cleared for pureed foods and thickened liquids. You can see him concentrating while eating to be sure the food is going the right way. It
seems to be getting a little easier each day, and he just keeps plugging along.
Many thanks for all your assistance. We appreciate the help and are often able to share our meals with other parents here at the hospital. Your
generosity is overwhelming and fills our hearts.
9/7/2008
We had a bunch of visitors today: Ryan, Matthew, & Benjamin (and their Dad), Trey (and his Mom), Robert and Patrick (and their Mom), my
friend Alison and her kids Eddie and Rebecca, plus Grandma and Grandpa and Patricia. AND Debbie, Felisa, Mary and Kathi took me to dinner.
Wow!
William discovered that pureed french fries are pretty good and so is a BBQ sandwich. He is doing well on the food chart. The docs are OK
with his intake thus far. Variety and quality will come with time. There was only one PT session today, but he spent a good part of the day
putting together a very cool (and complicated) Lego fighter jet. That took a lot of manual dexterity and patience. He also had a lot of
activity with his visitors. At one point we filled up the the 6th floor playroom.
Thank you for your suggestions on pureed foods. I think my favorite was the pureed Twinkies. We are big on smoothies. Jim makes
some of the world's best, so we should be in good shape when we get home.
9/6/2008
Will continues to progress. He woke me at about 4am this morning with a panicked sort of call. His ng tube had been pulled out. I think he was just
sleeping so soundly that he rolled over on it and then rolled back again... Anyhow, we called our nurse who assured him that it was not a big deal at
that moment, and no one would scold him. We went back to sleep, and I did not wake again until 7:30! Wow. Will was still asleep and woke at 8am.
The rehab docs visited us a while later, and we discussed the options. I really questioned whether Will would be able to keep up a decent fluid or
calorie intake, but we decided to see how he did with breakfast. Oh my goodness, if you could have seen him! He drank 16 ounces of thickened OJ, ate
about 1/4 of a pancake, and tasted a muffin. He said that he was super thirsty.
The Wyton family visited us and Will gave them a tour of the hospital from a wheelchair. Then we got busy with the therapists. He had PT, followed by
speech at lunch. The speech therapist watched him eat lunch and coached him with suggestions to make eating safer. He has to be supervised
while eating, and I am finding that to be a very nerve wracking experience. He had a second PT session in the early afternoon. Remember yesterday's
hissy fit about the walker? Totally different kid today. He had tried pushing a wheelchair while walking and must have decided that the walker is
easier.
He was pretty wiped out after all that and spent the rest of the day playing video games and watching TV. Grandma and Grandpa came to hang out
with us for the day. Jim went up to Erie and took Patricia to a friend's birthday party, then they rejoined us for dinner and a movie.
Will's big concern right now is finding something(s) he likes in the pureed form. We tried mac'n'cheese, spaghetti, pasta & alfredo sauce, a burrito,
chicken noodle soup. None of them tickled his fancy. If any of you have any good ideas, I would love to hear them. Hopefully I will be able to find
more at home than we can order here. The soft solids and "meltable solids" are a lot of work for him. The nectar consistency drinks are working well.
He looks as though he is sleeping well again tonight, so Jim and I are hoping to do the same. Good night!
9/5/2008
It's Friday night and today's highlight was: the Swallow Test. Will had the official evaluation (a flouroscopy) where he ate food mixed with barium and xrays were taken to
see how he was handling those foods. It was determined that he is not safe to drink thin liquids such as regular water, milk, ice cream or jello. Neither are
real solids safe - a saltine cracker just sat in his throat. He has been given the green light on "nectar" consistency liquids, purees (like pudding), and semi
solids. We are experiencing a fairly steep learning curve on this one, so we will let you know how that progresses. So far we know that he does not care
for pureed mac'n'cheese or pureed pizza. He does like pureed chocolate cake, claims that it tastes like batter before you bake the cake. Yum!
He had PT today and seems to be stronger. He does NOT like the walker and threw a very ugly hissy fit when coerced into using one this afternoon. We
shall see what we can do to avoid walkers. He does not mind pushing his IV pole around. And that brings us to... having his mediport unaccessed this
evening. The only thing he is hooked up to now is the ng tube. Hooray!
9/4/2008
Today we switched from being under the supervision of neurosurgery to being under the rehab doctors. This means that Will is receiving
intensive therapy: physical, occupational and speech. The doctors think that he may be released in about a week.
Will had two PT sessions and one speech session today. During the speech session he swallowed some pudding! Hooray! Mrs. Brick was here
for that big moment. They will schedule a formal evaluation in front of a special imaging machine to verify that he can handle all the different
textures and liquids. He was walking around with his hands on his infusion pole during the therapy sessions.
We had lots of visitors today: Grandma and Grandpa, Patricia, Cousins Brian & Kelly, Aunt Kelly & Uncle Ed, Kathi B., Barb Hepp, Sue Fixter,
and Mrs. Brick. Wow!
They restarted formula through the n/g tube, but the end of the tube is beyond the stomach. It actually goes into the small intestine, so
Will still is feeling hungry. Hopefully they will pull the tube back into the stomach tomorrow.
9/3/2008 pm
It's Wednesday night, and it's been another full day. It began with the normal doctor rounds, then Will decided to get out of bed and sit in the recliner for a while. Just about the time he was getting tired, the PT showed up. He did some leg exercises in the chair, then headed out to the hallway for a walk. I cannot say that he was thrilled, but we (adults) were.
After the PT left, Will thought he might have a break, but... OT walked through the door. Will did his best to ignore her, however he eventually broke down. He let her put his right elbow on a pillow to relieve his shoulder of some pain he has begun to complain about. Speech therapy happened by about then, so the three of them played a rousing game of Rat a Tat Cat. By the time they (OT & ST) left, Will was ready for a bit of relaxation.
He played with his PSP and watched TV for a while. Grandma and Grandpa were here to visit with, and Kathi B. stopped by on her way home from work. Jim took off for a while. At 2:00 we were told that the OR was running a little late, so we were pushed back to 3pm. We left room 626 at about 3:00 for the eye procedure and were back in the room by 4:05pm.
The procedure is called a tarsorraphy - it sounds like a dinosaur. It consists of "a stitch" which is actually one piece of thread stitched through a couple times, to hold the eye closed. This should allow the current abrasion to heal and provide protection to the eye in the future. Right now Will has no blink reflex, no feeling in that area, and the eye does not close all the way. We believe that he will regain these abilities with time. When he does, the stitch removal is a simple office procedure.
Grandma and Grandpa picked up Patricia from school and brought her over to Children's to visit with us for a while. Will also had the opportunity to talk to his friend, Sam, on the phone. It was fun to hear the two of them compare their days.
As I tucked Will in for the night, he commented that it was a good day. I agreed with him. It seems as though we have made some progress. His eye should be good now. His therapy seems to be on track, and we can see progress. Without any prompting he chose to work with some play dough to increase his right hand strength. His eyes are tracking further to the right today, where they had been stopping at straight ahead. There hasn't been any more seepage from the incision. He looks a little spunkier than the last few days, and his humor is popping up again. He is getting PediaLyte (sp?)tonight and not vomiting. His hiccups (which were almost constant for the first 48 hours) are definitely decreasing. (Dr. Foreman says that hiccups come from the brain stem being disturbed.)
So, thank you for your notes, emails, and phone calls. Thank you for your prayers. Thank you for the meals and visits.
Blessings to you,
The Willer Family
9/3/2008 am Sorry it's been a couple days since the last one. We have had a lot going on, and some of our sleep has not been high quality. There has
been a lot of improvement, so let's get caught up...
Monday began with a formula feeding. Unfortunately Will vomited a lot of that one. After recovering from that bit of excitement, Jim found a
wheelchair, and Will went for a ride. Our destination was the volunteer office where there is a nice collection of XBox games. We left there
with 4 selections, as well as a new stuffed animal for both Will and Patricia.
Back in the room, Will had just turned on the XBox when the whole Beutler family came to visit. Will played XBox with the boys for a bit before
they left to attend the Rockies game. He also had a visit from 2 more opthamologists. There is still concern over the scratch on his eye, so he
now has a pressure patch to keep the eye closed. PT and OT had the day off for Labor Day. We are still trying to figure out where his wound
is seeping. The nurses have kept a pad behind his neck and head all day.
In the evening the docs decided to start feeding formula again, so a slow pump was started. After only 18cc Will flushed bright red and
began to throw up again. We stopped the feed at that point. We watched a movie that Jim brought back from Blockbuster, Transformers. We
all turned in at 10:30, but were awakened about 2 hours later. One of the neurosurgeons put some stitches over the surgical wound. We
are hoping that will take care of the seepage.
Tuesday was a full day. The hospital came back to life after the long weekend. The nurses changed the eye patch, but it would not stay put, so
we had 3 more opthamologists consult on the issue. They decided that Will needs to have a stitch or two put in the corner of the eyelid to help it
close. That is scheduled for Wednesday at 2pm.
Will had a great PT workout in the morning. He walked (with a little support) down the hall to a therapy room where he threw bean bags into a
basketball hoop. Then he walked back to the room. He said he thought the therapist overworked him. I went shopping for some distractions for
him. I returned with a "fart machine", a whoopie cushion, a squeezy ball, some play dough, and various other items. Will tried out several of the
items.
While I was gone, Will took a wheelchair excursion around the hospital. He had to be recalled for an MRI to verify that his shunt is still
operating correctly. His wound is no longer seeping, so they wanted to be sure there was no buildup of fluid in the brain. That MRI showed
that all is well. Will's friend Matthew came by after school. They played some PSP and XBox. Will wanted to play some pool, but the rooms
with pool tables were all closed. He was wheeling himself around by the end of the evening!
We all seemed to have a good sleep last night, so we are ready for today.
8/31/2008
Hey there Will Fans!
It's Sunday night, and it's been another busy day around the hospital. Will is getting feedings of full cans of formula through the ng-tube. They seem to be irritating his stomach, and his throat secretions seem to increase which makes for more "coughing". He is not really coughing yet - it's more of a throat clearing sound. I think it looks like hard work.
And speaking of hard work, Will had a great PT session this morning. He moved himself to the edge of the bed and only needed support from there to the recliner. He sat there for almost an hour and did a variety of movement exercises. The OT department also worked with him during that time. He had the last remaining IV removed from his right arm this evening, so he is getting all his meds through the new mediport.
A few new concerns today: Will had a visit from an ophthalmologist. He has an abrasion on the right eye acquired somewhere along the way due to that eye not being able to close all the way. He now has antibiotic eye drops to prevent infection, a greasy eye cream and a patch to wear at night. There is also some concern over the wound. It may be seeping a little, so we are keeping an eye on that too.
He is quite tired tonight, so we are hoping he gets some good sleep. Overall, today showed a lot of improvement. His speech is clearer. He is moving around more. He watched some of his favorite TV shows: the Suite Life of Zach and Cody.
Many thanks to our visitors today: Kathi, Felisa, Grandma, Grandpa, and Patricia. Also many thanks to our friends who are keeping Patricia busy and delivering such wonderful meals. We appreciate you!
8/30/2008 Huge progress! Will moved out of PICU and up to room 626 this afternoon. Hooray!
He got out of bed and sat in one of the comfy recliners this morning and again this afternoon. He is still using the suction tube to manage the saliva that he cannot swallow, but improvements are seen in all other areas. He actually stood for a bit and moved his feet to get to the recliner this afternoon. His speech is more clear, and he is giving us some orders. We love that! He is getting nutrition to his tummy through the feeding tube, and the medication levels have been declining. Days like today feel so good.
8/29/2008
The biggest news of the day: GTR! Yes, Gross Total Resection of the tumor, per the radiologist! We thank our Lord for this bit of awesome news!
9:30pm Follow-up: Will had the procedure to remove the broken line from the pulmonary artery at about 4:30pm. That took place in the Cath Lab here at Children's. We met two cardiologists(one was Dr. Tom Fagan), a general surgeon(Dr. Moulton), and two more anesthesiologists(one was Dr. Clark), as well as a couple more nurses today. I am missing some of their names, but they were all very kind and concerned about taking care of the problem. Immediately following the removal of the broken line by the cardiologist, the general surgeon took over. He romoved the old mediport "button", and put in a new mediport line. All went well.
The worst part was that Will had to lay flat on his back after all this. He is still experiencing trouble swallowing, so this was hard on him. He has been in control of the suction machine to help get the gunk out of his mouth/throat. He kept demanding to be allowed to sit up. At one point he angrily asked if we were trying to kill him since he could not breathe in that position. Respiratory therapy (Jerry) came by for a session, and I think that helped. Will is now resting in his normal propped up position. He had a little pain med to take the edge off, so I hope he will get some sleep tonight.
I know I am not telling you about all the great people here at Children's. I am trying to give all of them credit for what they are doing for us, but I cannot remember all their names. Please just know that if I miss someone it is a "slip of the pen, not of the heart." Every employee here is exceptional.
1:30pm Just a quick note. Will had a chest X-ray this morning to make sure his lungs were clear after yesterday's choking episode. When the radiologist read the picture, he could not see Will's medi-port line, so they came back and took another view. Turns out the line broke off of the port and was sucked through the vein. It is now lodged in the pulmonary artery.
Will is now scheduled for a cardiology procedure at 4:30pm this afternoon to retrieve the line that broke off. Then general surgery will remove the old port and place a new one.
Last night he had the arterial line removed from his left wrist. He also had a feeding tube put in through his nose to his tummy so we can give him some nourishment. The bedside swallow evaluation (PT's Mary and Colette) this morning indicated that this is required since his ability to swallow is lacking. We also had a visit from a nutritionist, Deb, for feeding recommedations. Unfortunately he cannot receive any feedings due to the scheduled procedures which will require sedation/anesthesia.
He is currently watching some classic cartoons on a DVD on my computer. We will try to update you again later.
Will nurses: Thursday night - Laura (She did such a great job removing the a-line and putting in the tube. Encouraged Will every step of the way and explained it all. Friday day - Debbie, same as Wednesday afternoon (She anticipated a lot of what was going to happen today, stopping his feeding so he would be ready, giving Will his first bath since the surgery, and always there to offer encouragement.)
Blessings to all.
8/28/2008
Thank you for your emails of encouragement. We have read every one of them. Sorry for not responding to each of you personally. Last night and today
have been difficult.
We are trying to keep our eyes on the positive notes, but there have been "issues" today. Will is tired. He doesn't think he got much
(any?) sleep last night. There was some nerve damage. He is weak on the right side of his body, and the right side of his face is slack. His right eye does
not close all the way. He is having trouble swallowing. The last problem lead to two choking episodes, so he is now NPO (nothing orally).
He had an MRI this afternoon, so we are hoping for some information from that. First we are hoping to hear "gross total resection", meaning that the tumor
is gone. To some extent we may also get some information about the post-op swelling that is going on. He is being given steroids to minimize the
swelling, and time is the best cure. He will be getting a swallow test in the next day or two to determine the extent of that problem.
He is still our fighting Will. Even in the midst of choking he was pushing the respiratory therapist away, insisting "I'm fine!" I don't think I have ever seen a
kid who is purple insist that he is fine. Patricia got to visit today. It was good to have the whole family in the room. Will also asked for his PSP. His internet
on the PSP is working in the PICU room, while mine is not! He has been checking out the GameStop website to pick out the next game Jim offered to
buy him.
Will's nurses: Wednesday night - Sarah(We were in such a fog, and she just did everything for us.), Thursday - Tammy (I'm afraid we ran Tammy ragged. She was awesome in her support, explanations and encouragement!)
So, I think that's it for now. Please continue to pray for recovery.
8/27/2008
It's been a long day. We arrived at Children's at 7am. As usual all the folks we met all day have been super people. Tara checked us in. Ellen watched over us in the surgery waiting area. Rosie was our pre-surgical nurse. We met Penny in the MRI area. Erica kept us updated from the OR. Dr. Handler was the neurosurgeon. He was assisted by Dr. Yasu and and one of the fellows, Dan. There were two anesthesiologists, Dr. Scott Markowitz and Dr. Nathan.
Will went to sleep at about 9:30am down in one of the MRI prep rooms. He was moved to the OR between 10am and 11am. The first incision was made at Noon. By 1:30 Dr. Handler had removed the tumor. They finished at 3pm. Grandma and Grandpa and Kathi Beutler waited with us during the surgery. They left at about 2pm to pick up kids from school. We were able to see Will shortly before 4pm, and he was moved from recovery to PICU by 5pm.
He is now resting. It looks like he is getting some good sleep. He looks great. He was talking to us and responding to questions. He was intubated for the surgery, so his lips were a little chapped and his voice was a little cracked. He said he felt "a little fuzzy." He had a slight rash reaction after getting some morphine, but it died down very quickly.
We were greeted in PICU by Karen, one of the social workers we met during Will's very first hospital stay eight years ago. She had seen his name on the board and came to find us as soon as he arrived in PICU. His nurse right now is Deb, but she leaves at 7pm. We were talking with Karen, thinking that Will was sleeping, and Karen commented that Will looked like an angel. Will opened his eyes and wanted to know who dared to call him an angel. Then he said "Just kidding!" Karen brought him some lip balm to help those chapped lips. I had mentioned to Will that Karen had given him a big stuffed animal during that first stay. After she left, Will said that he wanted to give her a gift too.
It's now almost 6pm. We are thinking about a little dinner and having a quiet evening.
8/21/2008 We have a plan. The surgery is scheduled for Wednesday, August 27th, at 9am. We will check in at 7am. Will is scheduled for lab work, a physical and a meeting with Dr. Handler on August 26th. Did you know that September is Childhood Cancer Awareness Month? I found another great website: www.curesearch.org. It has lots of information from all kinds of sources for all kinds of people.
8/12/2008 Will had MRIs of the brain and spine today. The spine MRI is clear. The brain MRI showed that the tumor has grown slightly since April. The growth is very slight - from a size just under a centimeter in April to a little over a centimeter in size today. This ends his participation in the study of the drug R1507. We will be meeting with various doctors in the next week or so to determine the course from here.
We were at Lake Powell last week and had a ton of fun and relaxation. Will claims that his favorite part of the vacation was the mud fight day. Photos will be posted soon. School starts next week, so... on with life!
7/13/2008 We arrived home from Tucson, Arizona, late this afternoon. William participated in the National Junior Championships, playing 9-ball billiards. The tournament was run in a double elimination format, so Will played two matches. He plays in the 14 and under age group, and he is often the youngest player. He had fun playing and ended the tournament on a high note when he participated in the artistic pool competition, also known as "trick shots". Tom "Dr. Cue" Rossman ran this competition. He set up four very specific shots and coached the kids through them. Will received high praise from Dr. Cue. This was especially fun for Will because right after we set up our pool table last year, we saw an artistic competition on TV. Tom Rossman was one of the competitors! The next day, I found Patricia and William downstairs trying to replicate some of the shots they had seen, and Will asked if there were any tournaments for kids. Thus, it all began. There is an awesome slideshow from last year's tournament that you can see at www.cuetable.com/BEF. Just click to start the slideshow and the first two photos are of Will and Patricia! Enjoy!
7/7/2008 We are home from a fun July 4th weekend visiting Aunt Barb, Uncle Dave and Jordan in Granbury, Texas. We had a ton of fun swimming in the pool, playing in the lake, boating and driving waverunners! Both William and Patricia are quite proficient waverunner drivers. Patricia talked Jim into riding the tube with her while Uncle Dave did the driving. Jim says he is just a little sore from those rides. Will had an infusion this afternoon which went well. We leave Wednesday for the National Junior 9 Ball Championships in Tucson. Will has been practicing for the tournament, so we will keep you posted on the outcome...
6/27/2008 Good news! William had an MRI of the brain and spine yesterday, and today we met with Dr. Lia Gore for the results. The tumor has not grown! She and Dr. Foreman are quite pleased by these results. Wouldn't it be great if this new drug is "IT"?
6/15/2008 Happy Father's Day to all you Dads! Last Monday Will had the PICC line removed. It was an easy, in-office procedure that occurred after his regular infusion. Now he can go swimming! He has completed week 4 in Round 2 at this point, and is scheduled for an MRI on the afternoon of June 26th, followed by a consultation with Dr. Gore on June 27th. We went shopping yesterday for the items Will decided to purchase with the proceeds of the Pool for a Cure Tournament. He chose portable game systems and DVD players for the infusion chairs in the open area of the Oncology department, so kids in the chairs will have access to electronic gadgets just as the kids do in the infusion rooms. With Patricia's input, Will picked four Nintendo DS Lite game systems and ten games for them. He also added "gloves" for the systems to protect them if they are dropped. Then they picked out four DVD players and some new movies. He included headphones, so the kids can ignore outside noise if they like. These items were suggested by some of our caregivers in the Oncology clinic. To everyone who participated in that event and to Melissa Little who organized it, another heartfelt THANK YOU!
5/14/2008 Will had the MRI this morning, and Jim talked with Dr. Lia Gore this afternoon. There is no change in the tumor since April 3rd. We are taking this to be good news, since the tumor had grown slightly between February 20th and April 3rd. Dr. Gore and Dr. Foreman have suggested that we continue this routine for another 6 weeks and check again at that time for progress. So, that's our plan.
5/13/2008 Today was Will's week number 6 in the chemo routine. Tomorrow is the MRI to see what effect the drug has had on the tumor. The time has flown by us. We have not seen side effects from the drug. Will has elected to keep the PICC line in his arm for the duration. It is very low maintenance. We flush the line and Heparin-lock it daily. Deb, one of our favorite nurses, changes the dressing each week while we are there for the infusion. Last week Will was gifted with a "Bag of Fun" from the Gabby Krause Foundation. It was overflowing with toys and games, including a Nintendo DS. We played a really fun version of tic-tac-toe, and Will got some good shots in with a new dart gun. This week Will was busy with some homework. Did you know that the shortest and steepest railroad in the United States is located in Iowa? Me either.
4/20/2008 Pool for a Cure! Wow, what a great day! We arrived at the Wynkoop at 11am, and Will signed in for the tournament. Patricia helped Melissa run the sign in table for the next hour. Almost 30 billiards player from the metro area came out to play, and they brought friends and family to fill the billiards room at "The Koop". Will gave two players a good run for their money, then he was out for the day. He was full of smiles and truly enjoying the action. Between the tournament and the silent auction, over $1560 was raised! Our thanks to Jacoby Cues for their amazing donation of a cue worth $1595 as the prize for first place! And our heartfelt thanks to all the generous folks who participated and contributed. AND a thank you to Melissa Little, who organized the entire event. May God bless you all.
4/18/2008, 10:30am We just had a phone call from Dr. Meg, one of the residents working with Dr. Gore. She said that Dr. Foreman has looked at the PET/CT scan from Wednesday, April 16th, and it is his opinion that the tumor appears to be smaller. This from a scan done the day after the second infusion! Prayers of thankfulness and tears of joy. Thank you, thank you, thank you!
4/16/2008 Will had a PET/CT scan this morning. He went to school just in time for lunch. We will wait for a call with information from that scan.
4/15/2008 Will went to school all day yesterday! AND there was pizza for lunch! Life just doesn't get much better than that... Today I picked him up from school just before lunch at 12:30pm. He had an infusion of the chemo for one hour and had to stay an hour for observation. What we didn't realize was that he had to have labs drawn to be certain that he is healthy enough for the drug, and that takes some extra time to get those reports back. Then we waited for the drug to be delivered. They have to mix it just prior to usage. So, we left TCH a little after 6pm. We are ever so thankful for everyone who works there. They are some of the best people on earth. Their actions prove on a daily basis that they are there for the kids, no matter what time it is.
Will's body is doing well with the drug. His counts and chemistry are all doing fine. He has managed not to catch a cold that Patricia and I picked up. And he is getting pretty good at a couple X-Box games - they have a drawer full on the 7th floor. He and Patricia have been beating Jim at badminton recently. He has also been doing a good job cheering for Patricia and her volleyball team.
4/10/2008 Yesterday and today have been simple days. We took Will to Childrens at Noon each day for a blood draw. That's it. Then back to school for the afternoon.
4/8/2008 It's been brought to my attention that I have skipped a lot of technical info, so for you techies out there.... The drug Will is getting doesn't even have a name yet. It is "R1507". It is a monoclonal antibody that is also an insulin-like growth factor receptor inhibitor. HA! IGFR for short. This makes it a targeted drug. These drugs go directly to these receptors on the tumor cells and inhibit further cellular growth. We learned this morning that Will is the first person in the whole wide world with ependymoma to receive this drug. We pray that this is the one that works.
This morning we arrived at TCH at about 9am. Will had his Mediport accessed for the first time. We had applied EMLA, a numbing cream before leaving the house, and it worked.Will said he did not feel the needle as Deb pushed it into the port. He had numerous blood draws prior to the infusion. During the infusion, his vital signs were checked every 15 minutes. Will said it's been a boring day so far. He has been playing his Nintendo DS - we picked out a new game yesterday: Super Mario Bros 64. He just started on the XBOX that is in the room - TMNT. Today's infusion lasted 90 minutes. Future infusions will only be 60 minutes. Today they are doing blood draws right after the infusion ends and 6 hours later, so we'll be here until at least 6:05pm tonight. They won't do this in the future.
4/7/2008 Monday... On Friday William had the Mediport and PICC line surgeries. Unfortunately one of the MRI machines was down for maintenance, so the MRI was put off until today. We had a quiet weekend since Will was somewhat sore/tender in the chest and arm. This morning he went to school for a little while, then we headed to TCH for the MRI. It was clear! That was a nice bit of sunshine on a snowy Spring day. Will developed a rash around the Mediport, so we had the staff look at it. We decided that he must be having a reaction to the glue used on the surgi-strip, so one of the surgical staff pulled that off and sent us home. We are scheduled to be in the Oncology Clinic most of the day tomorrow for his first infusion.
4/3/2008 William had a full morning today. We started out in the oncology clinic at about 7:20am where he had an IV placed and blood drawn. Then we headed down to radiology for the PET/CT scan. He was injected with radioactive stuff that was delivered in a metal-sheilded tube, then had to wait about 45 minutes for the body to metabolize it. Finally the scan was done. He did a great job lying very still. Next was the MRI, which called for more lying still. Last, but not least, was the echocardiogram up in cardiology, which called for more lying still. We had a bite to eat, since Will did not get to eat breakfast, and headed back to oncology to have the IV removed. Will got to school at the end of lunch recess today.
We had a call this afternoon from one of the nurse practioners, Molly. She told us the PET/CT had a bright spot on/near the spine, so Dr. Foreman would like Will to have an MRI of the spine so we can figure out what it is. That is now tentatively scheduled for tomorrow at Noon, after the morning surgery for placement of the medi-port and PICC line. The days are just packed...
4/2/2008 We arrived home from our spring break vacation last night. Wow! What fun in the sun we had! William had an appointment this morning to go over the consent forms for the clinical study and an EKG. We go back tomorrow morning for blood work, the PET/CT scan, an MRI, and an echocardiogram. Friday morning he will get the mediport and pick line. That will be an outpatient surgery. The first infusion is scheduled for next Wednesday, April 9th.
3/12/2008 Will had an appointment with Dr. Lia Gore, clinical study oncologist, and Dr. Nick Foreman, his long-time neuro-oncologist. During this appointment, the treatment plan was developed, and Will had some input on the plan. We will take a trip during the school Easter/Spring break week, then start when we return. During the first week of April he will have a mediport put in his chest and a pick(sp?) line in his arm. The infusions of the chemo drug will go through the port, and the blood draws will be through the pick line. He will also have a baseline MRI for the study and a PET/CT scan. Then, during the week of April 7, he will have the first infusion which should last about 90 minutes. He will go back the next two days for blood draws. The following week he will have the second infusion one day and an MRI the next day. Weeks three through five, he will have an infusion once per week. Week six will be one infusion with an MRI and PET/CT scan the following day. That's the basic plan, always subject to changes. We will watch and see what effect the meds have upon the tumor before heading to surgery, which would be the next logical step.
3/6/2008 William had an appointment with Dr. Michael Handler, his neurosurgeon, this afternoon. Jim and Michelle went along to ask questions. Our biggest question was, "Are you comfortable with holding off on surgery while we try a clinical trial?" His answer, "Yes." Dr. Handler feels that the tumor is so small right now, maybe about one centimeter across, that it could be difficult to locate during a surgery, even with all the real-time imaging equipment available. We are all hopeful that the new medicines will have some effect on the tumor, but if it grows anyway, then it should make the surgery a little easier.
There is an appointment scheduled for next Wednesday afternoon with Dr. Foreman and Dr. Gore. We will discuss the protocol required for the clinical trial, and the associated scheduling.
2/28/2008 Dr. Foreman called today with the spinal fluid cytology results. There are no signs of cancer. Whew! We will be meeting with doctors in the next week or so to develop a treatment plan. Because Will has no symptoms, there is no hurry to surgery. We will probably opt for a drug treatment to see what effect it has on the tumor. The drug we are considering is a monoclonal antibody that targets the insulin like growth factor receptors on cancer cells and inhibits growth of those cells.
2/27/2008 Well, we had a bit of "one of those days." William ate breakfast this morning, and he was supposed to be "clears only." After a few frantic phone calls, our scheduler, Bridget, moved the appointment to this afternoon. He could have Gatorade and Jello, so I ran to the store and gave him Jello and Gatorade for his snack time, but he did not eat any until I picked him up at Lunch. He then ate 4 Jellos. So, we arrived at Childrens before 2:45 and checked Will in. They put him to sleep about 3:25 and he was done by 3:35. He slept for about 20 minutes, then laid flat for a little longer. Moved to a sitting position and we were out before 4:30. Jim was there too, and the three of us hit the cafeteria, 'cause we were all hungry.
Before we left, they already had most of the spinal fluid counts. All were normal. The only thing left is the cytology. Dr. Foreman only trusts one of the lab docs to do that and she was gone, so we will get the final word tomorrow.
Yesterday's MRI of the spine was clean, so that was good to hear.
2/26/2008 William had the MRI of the brain and spine today. We will get the results tomorrow when we go in for his lumbar puncture (aka a spinal tap).
2/22/2008 Two appointments today. Jim and Michelle went without Will. We first talked with Dr. Lia Gore about experimental drug therapies. She has two studies that Will could fit into. The second one she told us about involves a monoclonal antibody that attacks only specific parts of cancer cells. This leaves normal cells intact which translates into very few side effects - no hair loss, no blood count drops... It sounds promising, and she all but promised Will a spot in the trial. We asked about gene therapy, and Dr. Gore replied, "Gene therapy looks very promising for the future, but we don't know how to do it yet."
The second appointment was with a pediatric radiation oncologist, Dr. Arthur Lui. We have previously been told that Will has already received a lifetime dose of radiation. Dr. Lui told us that ideas about reradiating areas have been changing. He would be comfortable with radiating the area where this tumor has reappeared. He would not be comfortable with doing a larger area, due to the proximity to the brain stem. This tumor is in almost the exact same spot as one of the prior occurences that received radiation, so this would be the third time this area would be receiving radiation.
Will has an appointment for a more precise MRI of the brain and one of the spine too. This is scheduled for next Tuesday, February 26. Will also will have a lumbar puncture (spinal tap) to check the spinal fluid for signs of metastatic tumor. No date yet on that one. We pray these will be clean.
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.