December 20, 2004

It's been 2 1/2 weeks since the initial seizures that led to the discovery of a new large tumor. I'm happy to say he's come a long way since then and made great improvements in his language abilities. It's not consistent daily improvement. Some days seem harder than others but on a whole he's doing much better. Understanding language and speaking are better but when he' tired it's a stuggle. Reading and writing are still difficult. Also, in the last letter, I wrote about these "little seizures" he was having. I know many people have been praying about that and I'm happy to say that over the last week he's only has one that we are aware of. Yeah!

Scott's spirits and hope are way up!! We believe in miracles and are praying that Jesus will heal him. Recently, we've came into contact with two people who had brain tumors, one almost the exact same scenario as Scott's (same location, surgeon, and everything) and they have both said that they have been "healed" by God. They both came to the extreme point where medicine had very little to offer them and they said that God healed them through prayer. Scott and I are believing and praying for the same thing. It's funny how humble Scott is. He doesn't feel like God owes him this, that he's earned it, or deserves it. He's says, "I'm just this little dork and the Lord's been so good to let me experience all the blessing the Holy Spirit is pouring out on people. I want to serve him more." We continue to receive stories from friends and others who have been encouraged in many ways through the struggle we're going through. Hearing the ways people are touched has brought purpose to all of this. Scott's really looking forward to giving you an update himself. We'll work together to make it happen as soon as we can.

We've given you our spiritual perspective on battling this cancer but I think it's fair for you to also know the medical perspective on what Scott's dealing with. This most recent tumor, which is right in the area of his language center, grew from nothing at all to 3cm in only 3 weeks. His surgeon told us he's hardly seen a faster growing tumor in 20 years. Scott was on a chemo at the time of it's growth. They say this tumor really can't afford any growing room. If it doubles, that's it. There are two other smaller tumors also in areas where they can't be removed but their biggest concern is the larger tumor. They hope this recent chemo, which is one of the older generations, will be able to halt it's growth. Given that information, we can't help but to hold onto our joy and hope for a miracle.

For the holidays, we are sticking to our original plan, which is to go to Colorado and visit with our many friends and family there. From Colorado we will fly to Arizona and spend some time with Scott's mom and dad. I can't wait to get there and be in the warmer weather! We hope you too have a wonderful holiday full of joy, hope, family and friends!

Happy Holidays, Merry Christmas and Happy New Year to all of you!

Love,
Michele

Hello everyone!

Scott started a new IV chemo on Monday that he will get every 4 weeks. It only took a couple hours and so far his side effects aren't bad. He's feeling very tired but his language ability is getting a little better. His is still experiencing what seems to be very small seizures although he is on high doses of two seizure medications. He is also taking 8 different meds acouple times every day and that's making him tired. We know we are constantly wrapped in prayer and love. That is boosting our confidence and we are holding onto hope for a miracle. There is no other way for us to believe. Until God says this fight is over, it IS NOT over. Scott feels this way and expresses it the best he can.

Many of you are wondering about helping with meals. Our friend Gretchen Flores is coodinating that for us. Her email is gretchen_flores@comcast.net or her number is 1-847-328-7148 or cell 847-347-0438. Thanks Gretchen!!

Thank you so much for your offers to help with childcare. I'm plugging people in here and there but still taking leads on full time paid sitters.

Michele

Scott is home and we are all so happy about that! He is having great difficulty with language, which is more complex than many people realize. It's hard for him to understand many of the words we are saying and in turn he also can't locate words to express himself very well. He can't really read or write. All his memories are in tact. Please keep him in prayer for the frustration he is experiencing right now. Pray for more good times and fun with Josephine and his family.

You all know that Scott is a man of God. His hearts greatest desire is to love and serve our Lord and throughout this ordeal God has used him to bless many many people. In the past he's shared love and encouragement with fellow patients on his neurology floor as he walked room-to-room getting to know them. Immediately after his most recent brain surgery, he prayed openly for scared young many next to him in the recovery room. (On Thursday, his neuro-surgeon told us the staff in surgical recover still talks about that.) We've held hands with nurses and prayed for their children. And I know that many of you have also been touched by God through Scott.

I'd like to share with you the latest reminder that God is still near to him, surrounding him, and using Scott to bless others. On Friday, Scott was transported to a room at Northwestern hospital. As I walked down the hall to see him in his room, his nurse met me halfway. Her eyes were red with tears and she apologized to me for crying. She explained that she's been doing this job for 25 years and caring for patients in Scott's condition is nothing unusual to her. She couldn't contain her tears because when she entered his room she felt such a powerful overwhelming feeling in her soul. I smiled because I knew, without question, that she felt the presence of God and God is powerful. She said she communicated with him a bit, the best she could, but had to excuse herself because she was so "touched" and couldn't control her emotions. She wasn't saying she felt pity for Scott, she just felt overwhelmed by the presence in his room. I thanked her for sharing that with me because it was a comfort to know God is surrounding Scott and still using him, even with very few words, to bless others.

The other blessing I would like to share with all of you is we are expecting another child in July! He and I are SO excited about having another child. A brother or sister for Josephine!

God bless you for your love and prayers!

Michele

Last week Scott was having some difficulties with speaking and understanding. On Thursday he had a sharp decline in his ability to speak and came to me in a panic. I immediately took him to doctors at Northwestern and he had an MRI. To everyone's shock, even his doctors, they discovered a brand new very large tumor in the middle of his language center. The tumor was surrounding by swelling, which is typical. As the hours past he regained a great deal of his ability to speak and understand so we went home with a prescription for steroids to help with the swelling.

Not long after we got home, Scott had a grand mal seizure on our kitchen floor. Luckily he wasn't injured from the seizure because it came on while we were embraced, slow dancing. My arms were perfectly placed to get him to the floor with the some help from his mother. The paramedics took him to a local ER and there he had another grand mal. That night he couldn't speak at all.

The next day he was transported to Northwestern Memorial Hospital where he is now under the care of his regular oncologist and neuro-surgeon. They have him on heavy anti-seizure medication, which makes him very tired, and steroids to reduce the swelling. His ability to understand and speak is improving but it's not good. He is very tired but we hope to go home tomorrow or the next day.

This new tumor cannot be removed without permanent brain damage, so our next step is another chemo. They don't expect him to fully recover his language abilities but things could improve for a while.

At this point it's not a good idea to call and speak with him and I wouldn't suggest coming to see him unless you speak with me first. After we get home, call if you want to come and see him and I'll let you know if it will work out.

Sorry my note is so dry. I'm a bit exhausted. As Dave said in his previous letter, we are looking for help with Josephine so I can be a constant help to Scott. Here are some ways to reach me.

Home: 773-227-3048 (best)
Mobile: 773-415-2870

Thanks so much for all your love, prayers, and concern. I'll try and update again soon.

Michele

Dear Friends of Scott and Michele,

Tonight’s news is of the serious variety. Scott has had one or two seizures caused by a newly formed tumor in his brain. The seizures happened yesterday (Thursday), and I’m not sure of the exact details, but I believe the new tumor was discovered today.

Scott has been admitted to Northwestern Memorial Hospital here in Chicago and will probably be there for some time undergoing tests and hopefully some new therapies. Michele will be spending a lot of time with him there, so one practical request is for some help with child care for Josephine. Michele has asked if there is someone who can look after her for 3 or 4 days a week for 8 hours a day or so. They’re willing to pay—probably around $8/hr. If someone has the time (for instance a student with time off) and is willing, please contact us at ScooterScoop. Please write “Child Care” in the subject line so we can track your messages more easily.

For those of you in Chicagoland, it’s OK to visit Scott at Northwestern, but it’s important to know that the new tumor has affected his communication ability. It’s difficult for him to speak and it takes him a while to understand those speaking to him. Be patient; be encouraging; give him lots of love. He’s admitted as Joseph Scott Gray, and he’s in Room 1122.

Finally, as we all know, Scott is a man of great faith. This is not a time to be depressed and feel defeated. It is a time to pray. Many of us are praying for his healing, but pray however you feel led. Scott knows his life is in the hands of Almighty God, and no matter what happens, he would say, and want us to say, Blessed be the Name of the Lord.

David Schuman
ScooterScoop