Last night we had quite a scare. Scott started having little seizures. In the past those little seizures led up to a grand mal, which is a really big seizure. If a grand mal seizure happens, we're in big trouble since it could take a very long times (weeks-months) for him to recover from the brain trauma caused by the seizure alone. At this point we can't afford that kind of time to delay treatment. With the help of our neighbors, Mike and Joe, I got Scott to the emergency room at Northwestern Memorial Hospital. They did a scan of his brain and didn't find any serious looking problems like bleeding or infections. They suspected that some the normal swelling that comes post surgery was causing his little seizures. I was able to take him home with increased steroids and seizure medications. Today I'm watching him very closely and tomorrow he will still get the Gamma Knife radiation treatment as planned. He should still be starting chemo early next week. We can't afford any delays in this treatments. Keep us in your thoughts and prayers.


Michele

It's been about 10 days since our last update. Scott came home from the hospital last Tuesday. Recovery is still very hard and he's very tired. It's much harder this time because it's his third brain surgery and as you know it was an extensive one. Scott is still struggling quite a bit with language. It's difficult for him to come up with the right words for things and understanding what people are saying. Also reading and writing are very bad. We are hopeful that with lots of work, we can bring back much of his abilities. We will go twice a week for language rehad but I will be Scott's main teacher and coach. I've already started shopping for phonics workbooks and picture dictionaries and I've discovered a few tools that might make the work more fun. Sometimes, I worry about how much work we have ahead of us and how frustrating it can. I wonder if it's really possible but then I remember that he is already doing better than the doctors expected and we've met people who had to go through years of language rehad. Most importantly, these days I try and remember Gods word. He said,"Is anything too hard for me (God)?" The only answer is "No God, nothing is too hard for you." So, we need Gods help and a miracle and that's not impossible. Also, Scott has an incredible determination to succeed.

Friday is an important day. We go back to the hospital for his MRI followed by Gamma Knife radiation surgery. They hope the MRI won't show any new growth since the last one and that the radiation will kill the remaining small tumor. It's a once time treatment of radiation with a possible overnight stay. It can take a couple months to know if it was a success.

Next week, Scott will begin his next regimen of chemo. This is his forth attempt at finding a successful chemo. We're praying for God to make this next chemo effective and supernaturally remove any remaining cancer cells.

Thank you so much to all those who have been helping us in so many ways. It's hard to explain how deeply you have touched us. Scott gets very emotional about those things because he can't believe how so many people have come forward to help take care of us. You've taken on many of our everyday burdens for us. For me that means I can do a better job caring for Scott and our household and for Scott, that means he doesn't feel the stress of not being able to take care of us right now.

God Bless and I'll let you know next week how everything is going.

Michele

More Good News!

Dr. Chandler, Scott's surgeon, came in yesterday on his day off to see how Scott was doing. First, he took a look at the MRI to see how much of the tumor is remaining. Scott's mom, dad, brother and I crowded around two very large computer screens so Dr. Chandler could show us the comparisons of the MRI taken the morning of the surgery and the one taken the day after. The first image is just shocking when you see the huge area of Scott's left temporal lobe that is taken over by tumor. It had definetly grown bigger since the last time I saw it and I could only imagine how it must have felt for his family to see it for the first time. Then, to the right, we looked at a screen with the image taken after surgery. We could all see the huge hole that was once the ugly tumor and it was beautiful. The surgery went extremely well and almost the entire tumor is no longer visible. I believe it's gone, even though they say that we can never be sure. There is only a very small portion, much smaller than even Dr. Chandler expected, still remaining. Everyone felt relief and joy. What's just as miraculous is that with so much of Scott's brain cut away he is functioning fairly well. We know we do have a lot of rehab work ahead but Dr. Chandler said he really didn't believe Scott would make it through the surgery at the level he's at.

So now it's Sunday and Scott is still very tired and a bit groggy. Like I said earlier, he's struggling with finding words and naming things and still needs extra help understanding. I'm there almost all the time to help him answer questions for his nurses and explain things to him in a way he understands. His eye sight is a little messy because the swelling in that area so I hope that will clear up. He's not having any phone conversation right now, I'm sure that would be difficult and frustrating but hopefully soon.

Really, things couldn't have gone better for his surgery. Praise God!!

Love,
Michele

It's Saturday, the day after Scott's surgery. You've already received Dave's
email (thank you very much Dave!) so now I'll fill in the details.

Yesterday, it took about 6 hours from the time they wheeled him away from me
until the time his surgeon came out to give us a report. Unlike the past, this
time Dr. Chandler took us into a private room to give us his end of surgery
report. That was nerve racking but I was very hopeful. The first thing he said
was that the morning MRI showed more strong growth in the tumors since his MRI
two weeks ago. Booooo! Then he said they worked very hard to get as much of it
out as possible and that Scott has a very large hole in his brain now. They
stopped cutting when they could see healthy brain fibers mixed with tumor. He
hopes the remaining tumor area is small but we won't know for sure until Sunday
or Monday, following his MRI today. Then he shared the best news. He said he
expected Scott to come out of the surgery mute, but coming out of his anesthesia
he was thanking the doctors and nurses and asking about the time. Hallelujah!
That was a very good sign.

Talking with him later and today, it's clear that he's been saved from the very
high risk of severe brain damage. One more hallelujah! I don't know anything
about his reading or writing but at this point I can say his comprehention seems
to be only a little worse than it was going in. His speaking ability is worse
but that's the area where I know we can get improvements through therapy.
Yesterday, he was trying to talk a lot while he was in recovery, I finally had
to leave so he would rest. Before I left, he was telling me that he loves the
Lord, he loves me, and Josephine and . . . oh, did I forget to tell you? He
was also talking about his SON, who is due in July. We found out last week that
we're having a little boy! He asked about his family and friends and wanted me
to read to him from the bible but he was falling asleep and needed to rest.
Today, he's sleeping a lot and is very groggy while he's awake but he keeps
asking me if he's ok. I'm assuring him that he's much better than OK!

We've just made it through one leg of our most recent race and it could have
turned out very bad. But we have the God of the Universe on our side and the
prayers and love of so many people from here and around the world. It's true.
We love you all so much.

I'll keep you posted. At this point please don't try to call him or visit at
the hospital because he need his rest to recover. Thanks.

Love,
Michele

Dear Friends and Family of Scott and Michele,

Great news! Scott came out of his surgery thanking his doctors, and when he saw Michele, he called her by name and was asking her, "Am I OK?"

Michele asked me to get a quick message out to the ScooterScoop gang saying that so far everything seems very good. She plans on sending out the details on Saturday, but the bottom line is that they took out a lot of tumor and Scott is still able to communicate! Praise God!

Michele sounded somewhere between ecstatic and very, very relieved when we talked. No surprise there! In all of this she has been amazingly strong in her faith which has sustained her so much through the last year. Keep praying for her as well as Scott. There's still a lot ahead of them both.

More later. Thank you all for your prayers and support for Scott and Michele. Many Blessings to you all.

David Schuman

Hi Friends -
I just sent out an email to everyone explaining the hopes and dangers of
Scott's surgery on Friday. We need to get people together for praise and
prayer on Thursday night. We want it to be a time of joyful singing and
celebrating the love of our Lord. We don't want it be a sorrowful time
because it should't be, we have so much to be thankful for! We know this
is serious surgery but it's important that we send Scott into surgery the
next morning with a joyful song in his heart, profound love for Jesus
Christ, and peace that passes understanding. We will do that by lifting
our voices and praising God! Please join us if you can.

Thursday, February 10
7PM
Our House: Call for detail and directions
773-227-3048

Thanks,
Michele

First, we are praising God because two months ago they never thought Scott would be doing as well as he is today. So we know that by a miracle or through the help of his recent chemo, the tumors in Scott's head have slowed down their extremely fast growth.

Next, Scott wants to again express how deeply he is touched by all of you following along our journey and encouraging us.

Unfortunately, here is the very serious and frightening news. Yesterday (Monday), we met with Scott's surgeon to talk about the most recent MRI he had for mapping his language areas, called a functional MRI. They weren't able to get very good information from that test, probably because Scott didn't understand the directions. His surgeon was surprised to find out that doctor who conducted the functional MRI also performed a standard MRI. They are glad he did because it gave his surgeon important information that we would not have discovered until later. The MRI is showing continued tumor growth. Not at the original pace but at a rate fast enough that if it continues it will take Scotts life in a month or two. He and I have noticed over the past three weeks, as you've read in my emails, that his language skills have been declining and now we have confirmation that it's because the tumors are growing into very critical areas of his brain.

They have given us the option of surgery but it carries a very heavy risk. Dr. Chandler would remove a large portion of the tumor and there is about a 40% chance that it will cause permanent irreversible brain damage. Scott would no longer be able to understand our words, or speak any of his own, be able to read or write or communicate language in any other form. In this case he would probably live 3-4 months but it will be a miserable existence. There is about a 60% chance that he will come out of the surgery without further damage. He would then get gamma knife radiation surgery to the remaining small portion of tumor followed by chemotherapy. Our best hope in this situation is that it will be effective and his life expectancy could be 6 months to a year.

There are no "good" options but we've decided to risk the surgery which will happen this Friday at Northwestern Memorial Hospital. We won't know if there is any permanent brain damage for 3 to 4 days, since it takes a bit for the brain to recover from the surgery.

This was such a hard decision knowing that after Friday, Scott could cease to exist as we know him, but it seems worth the risk to prolong his life and most importantly we continue to believe that God has a miracle of healing coming for Scott. As foolish as that may sound to some, we are refusing to accept the negative outcomes for Scott and truly believe that God will rescue him. We have so much to do over the next few days to prepare for what lies ahead, most importantly we will continue "LIVING" and enjoying our growing family. We'll be getting lots of prayer and continue to ask all of you to intercede on our behalf for a miracle for Scott.

I have an ultrasound scheduled for tomorrow morning so we can get a good look at our baby to come. We're so excited about that and finding out the sex of the baby! We'll let you know as soon as possible what we find out. In case you didn't already know, I'm due in July, just a week before Josephine's second birthday.

A note about ways to help us. Over the past year many people have come to help us in so many ways. We are so so grateful. It has been a huge blessing to receive meals and help around the house. Also thank you to those of you who have provided us with loving care for our daughter Josephine. If any of you would like to help with meals or cleaning, (sorry, it's kinda the dirty work) I'll give you the names of the two wonderful women who are coordinating that for us. We are so lucky to have a great nanny for Josephine and a number of others who have volunteered to help with her so we have the fun part covered. And let me tell you, she is becoming a very silly fun little girl! God bless her. Named after her dada. That was a great choice! She keeps the two of us laughing and full of kisses and what she calls the "b-hugs", that's "big hugs" to you and me. Ok, so back to the two contacts for help:
Meals
Gretchen Flores
email: gretchen_flores@comcast.net
phone: 303-319-0234

Cleaning
Kristin Stuck
email: jkandastuck@aol.com
phone: 847-864-4495

Love,
Michele and Scott

Hi Friends -
We have lots of appointments and some big decisions next week so we'll get an update out during the next week. Stay tuned.

Love,
Michele and Scott