History

Sunday, June 29, 2008 7:16 PM CDT

Gage had his latest treatment last Thursday, June 26, and did well. He slept through it all as he usually does. He has been a little cranky and has had some slight nosebleeding. This week was the 5th anniversary of his diagnosis and it fell on the same days as that year. Not a fun thing to think about, all the tears and trauma, but we are in a happy zone now with lots of stability! He looks great, weighs 52-1/2 lbs., and is almost 46 inches tall. His two top front teeth are loose, so will probably have cute Kindergarten pictures this fall. His next treatments will be July 10 and July 28. His birthday (24th) falls on the normal treatment day so we asked to move it up a little. Thanks for the many prayers for Gage & our family over the years!! Job 37:5

Saturday, June 7, 2008 11:05 PM CDT

Gage's MRI on Tuesday was very STABLE!!! blessings to all, terri (mimi to Gage)
Here's a recap of Gage's tumor history. June 25 will be the 5-year anniversary of diagnosis of the stage 1, JPA in the optic chiasm/hypothalmic region.
Dx 6/2003 at 11 months old w/3x5x4cm JPA w/Diencephalic Syndrome (head bobbing, double vision, anorexic, nystagmus) dx'ed at D.C. Childrens.
7/03-8/04 Carbo/Vincr (first 12 weeks in DC area)
at St. Louis Childrens-stabilized but no real shrinkage
New growth while off treatment. St.Louis Childrens could not find the new problem. Dropped their services.
3/05 - Shunt plus Shunt Revision at DC Childrens.
3/05-8/06 - Temodar (oral chemo), then slight growth, now treated at Vanderbilt Childrens in Nashville.
8/06-started Protocel 23 which continues today.
8/06-12/06 - Vinblastine (quick IV push of chemo)-grew cysts at back of tumor.
1/07-3/07 - Protocel 23 Only(chemical/enzymatic alternative given around the clock)-Tumor flattened out to 8x7x6cm as it was dying but caused motor skills problems as it pressed onto vitals so sought new treatment and contemplated surgery in New York and DC.
4/07-Present - Avastin (antiangiogenesis drug) with small amt Irinotecan (CPT-11 chemo), plus Protocel 23 in DC for the first 10 weeks of treatment.
Shrunk 45-54% in volume and over 1cm all around, cysts have disappeared, no real enhancement on mri's now.
Also on mostly organic diet, no sugars or white flours, no sodas, lots of distilled or spring water only.
"Job 37:5"

Saturday, June 7, 2008 11:05 PM CDT

Monday, June 2, 2008 4:35 PM CDT

Oops--the MRI time is 8:30 on Tuesday morning. We will have to drive out of our house at 5:00 am to get there by 7:30. Gage cannot eat after midnight, clear liquids only till 5 am, and nothing after that because he gets sedated for the test. Gage's great grandpa "E" is having a rough day, still infected with a UTI and being transferred to an Annapolis hospital. He needs lots of prayer right now too! James 5:15

Saturday, May 31, 2008 10:55 PM CDT

Gage had his regular treatment on Thursday and it was one of the quickest days yet. The meds came in quickly after his blood counts came back as "good." He weighed in at 50.6 lbs. So he lost a pound and a half from the strep throat. We are so thankful that he can afford that now. In the past that much loss was a cause for great concern. Praise God that he is up to a normal size now!!! Also, both of his top front teeth are loose, right on time for his age!! He lost the bottom two around this time last year.

Tuesday, June 3, at 10 am, he is having his regular MRI. We are really praying that this one will show some more shrinkage. Of course, "stable" is always good but a smaller size is the best news.

Gage finished school on a good note. He will be going 3 days a week to a pre-K type program at a local church and will have a month of music classes also with Mimi (only once a week for 4 weeks). Lots of "john deere riding" for summer also! Thanks for your prayers!!!

Wednesday, May 28, 2008 4:16 PM CDT

By last Sunday Gage had just about licked the strep with the help of antibiotics and God's blessing!! Wed, May 28, was his last day of regular school because he goes for treatment on Thursday, which is the last day for all others. Since he missed the last regular treatment, we hope his blood counts will be in a good range to receive it on Thursday, May 29. Karlee is lining up some classes for him for the summer so we are praying for some good experiences for him before starting kindergarten in August! His eyesight is the same, so he will need help in several ways. Thanks so much for your prayers!!

Wednesday, May 21, 2008 11:26 PM CDT

An early morning doctor's appointment on Wednesday concluded that Gage has strep. Karlee wanted a CT just to rule out any shunt malfunction or problems in his stomach with the tubing from the shunt since he had alot of constipation and complained of stomach pains. He also had bloodwork done. All testing was fine and got a liquid Z-pack antibiotic. He is still very weak, did eat one meal, and still has temp with sporadic Tylenol today. Will get Tylenol more regularly in him on Thursday. Of course, this cancels out any Avastin/Irinotecan in Nashville for this week. Will hope for all to be clear for treatment next week. His school was out for elections on Tuesday so he only ends up missing Wed & Thurs for this week. The Pre-K he is in doesn't meet on Fridays. The school is already working on transitioning him to Kindergarten for next fall. He was actually singing "Roll Over Beethoven" early today during one of the few times he didn't feel dizzy! Thanks so much for your prayers for Gage!!!!

Wednesday, May 21, 2008 0:51 AM CDT

Gage has a high temp and has only eaten breakfast on Tuesday after only eating lunch on Monday. Hopefully, it is only a passing virus. We can't get a good look at his throat so Karlee will probably take him to the local doc on Wed morning. Says he has a stomachache and is just tired, wanting to sleep on/off most of the time. Will update more when things change. Thanks for your prayers!!

Sunday, May 11, 2008 5:05 PM CDT

From Mimi:
Happy Mother's Day to all the moms reading this!!! Just a quick update because Gage is doing just fine these days. He was 45-1/4" tall and 52 pounds on last Thursday, his regular treatment day. His eyes are nice and steady and he is talking non-stop with an ever-growing vocabulary! We're saddened that his school year will be over in a just a couple of weeks. Karlee is looking into some programs for summer because it has helped him so much to get used to the classroom environment. Kindergarten will be a full day so we want him to continue "practicing" for it thru the summer. Plus the break for all involved is wonderful. He is singing parts of little tunes they learn at school and still jokes and teases with everyone he meets. His vision is about the same, probably seeing some color but for similarly colored things that blend in, he feels for instead of being able to distinguish them at a glance. Please pray for full potty training over the summer--it's been a long haul in this category due to many treatments, texture issues he has, and his mood issues. Thanks for your many prayers--it has been a miraculous year for Gage! Job 37:5

Friday, April 25, 2008 12:42 AM CDT

Since Easter Gage had to miss his April 3rd treatment day because he had a terrible head cold. The following week was his Spring Break so it gave him time to heal before going back to school which he definitely needed. He was cleared up enough to have regular treatment on April 10 with only a lingering cough in the mornings and evenings. He is finally, this week, just about over it and was able to have a good treatment on April 24th. He is having small nosebleeds which we think is from the Avastin but his DC doctor says if his blood counts are good not to worry. But today after just having it yesterday, he woke up with blood dripping onto the floor. At least it clears up quickly, but we are concerned. His Avastin/Irinotecan plus Protocel are working so well with God's blessings that we just pray for it to continue. At Mimi's consultation in DC they discussed Gage staying on this another year. Other children are doing well on it also, and they do not know right now what will happen when it is stopped. We are blessed to have Gage be one of only about ten across the country that are on this for his type of tumor!!! In the next 6 months they will be opening up more studies for low grade tumors for children. Avastin has not been fully approved for children yet, but it has been a great miracle for Gage!!!!! He is doing well in school (M-Th, afternoons), weighs 51 pounds and is 45 inches tall. As we told his Vanderbilt doctor on Thursday, we are in a Happy Zone!!! Thanks for your prayers!!!!

Saturday, March 22, 2008 6:50 PM CDT

Happy Easter! Gage did well on Thursday's chemo. Last Monday, March 17's MRI showed all is stable. Mimi is in Washington DC visiting Grandpa E & family and will have a consult with Dr. Packer at Children's Hospital there on Tuesday regarding the latest MRI. It is good to touch base periodically even when things are good! Gage almost weighs 50 lbs and looks great! Thanks for your prayers for him and please keep Sophie (8 on March 31) in Australia in prayer as she is having extreme difficulties now. We have stayed in touch with her family for almost 4 years now bec she has the same type of tumor as Gage.
~Job 37:5~

Sunday, March 16, 2008 8:33 PM CDT

from Terri:
Monday, March 17, at 10 am will be Gage's MRI. He hasn't had one since November. Since then he has gained quite a bit of good weight and eats all the time. Please pray for him to not get too fretful over food because he won't be able to have solid food after 2 am, then clear liquids till 8 am. We will be driving from 6:30 am till 9 am. We always have to be there an hour early for check-in, weigh-in, etc. This Thursday will be his regular treatment day plus we should be able to go over the results of the MRI with the doctor also. We're also praying for some more shrinkage to show up on the MRI. At Gage's eye appointment last Thursday, his vision in his good eye was measured at 20/80. Last September it was better, so for some reason it is fluctuating. He sees only a little bit of light in his left eye so that it still tracks as it should. We are thankful for that as no one would know that the eye is barely functioning.

Wednesday, March 12, 2008 0:42 AM CDT

from terri(mimi):
Gage is continuing to do well in school and is achieving better balance/hopping/skipping with all the extra PT/OT he is getting there and at private OT on Fridays. He loves making the raspberries now which he never did when he was a baby. The main language problem is common to alot of kids, the "l" and "th" sounds. But is still cute to hear "i wuv you" all the time. Monday, March 17, is the long awaited MRI; the last one was November. This Thursday, March 13, is an opthalmology appointment which is an hour and half drive. Gage had some small to medium sized nosebleeds this past week after the last treatment. We hope it was just dry heat and not from any problems with the Avastin treatment. They cleared up quickly thankfully. He is still on Protocel around the clock too. Thanks for your prayers!

Wednesday, March 5, 2008 11:12 PM CST

Gage is doing very well these days. He has adapted to school in the afternoons, still has to be coaxed alot to accomplish what the teachers want him to do, but is learning alot and trying new things every week! We go Thursday, March 6, for his next Avastin treatment and March 17 for his MRI. He has not had an mri since November so we are hoping for alot of improvement in this one also. Will update on weight and height after treatment day. Thanks for your prayers. There are still daily struggles in tiny rages of behavior but nothing like before and he is adorable and lovable most of the day. He cannot wait for better weather to be outside more!! Compared to this week one year ago, Gage has put on a full 20 lbs and looks terrific, is thriving and talking like a 5 year old for the most part!!! We are sooo thankful!!!

Sunday, February 17, 2008 0:51 AM CST

From Terri:
Gage's treatment day got changed by the dr to this coming Thursday. They called the day before and said that 10 days is too close to have the next one (it's supposed to be 14 days between) and rescheduled it for February 21, which is Aunt K's b'day so we will end the day with a birthday dinner in Paducah. Gage has come down with a stomach virus this weekend so we are praying that it does not lead to any trouble with the brain tumor because things are very stable now. He can tell us what hurts now and that is very helpful, such as headache and scratchy throat and that he just wants to sleep. There were 3 snow days this week because of ice so Gage still has not had a full week of school since starting in January. Thanks so much for your prayers!

Thursday, February 7, 2008 0:41 AM CST

Gage's treatments on Monday went well. He slept through it all which is such a blessing. He weighed in at 47.6 lbs and is 44-1/4" tall now!!! He is so heavy now that Mimi can't lift him. He is outgrowing all his clothes--what a miracle!!! He is doing well in school, not perfect or the same as others, but is improving each week in some area. He now goes in and sits on the circle time carpet and goes thru all the foreign language greetings (hola, bonjour, hello, etc) which is how they start each day. The school is in the process of hiring a full-time aide for him which is what we knew he would need (bec of limited vision). He does great in his own environment but for moving about the school and getting started in writing/coloring, etc., he needs individual help/encouragement. He's been there during a tornado drill and a fire drill already. An aide has been voluntarily staying in his class with him for the last couple of weeks which is a great blessing. Please pray for our other little brain tumor friends who are going thru rough times now: Heidi in St. Louis, Gunner in Benton, Ky, and Sophie in Australia.

Thursday, January 31, 2008 10:58 PM CST

From Terri:
Well, Gage missed treament last week because he was still getting over a cold and Karlee thought he needed to clear up more before being hit with the heavy drugs. He also missed his January MRI and the next opening is in March. Today was his next treatment day and it snowed here plus ice was predicted later in the day between home and Nashville, so we opted to go on Monday instead. Gage is the biggest he has ever been, a size 6 jeans! He's 5-1/2 years old now so that is right up with his peers now. Thanks for checking in and thanks for your prayers for his continued good health. Please pray that he will stay healthy w/all the winter germs in and around his schooling.

Saturday, January 19, 2008 10:16 PM CST

From Terri:
Gage is looking sooo good these days! The new meds to calm him are working and giving him a good appetite. He has gained 3 lbs in the last 3 weeks plus 1/2 inch in height! He is adjusting to school and had his best day last Thursday, so we hope it continues. He had to miss one day already for chemo day and one for the sniffles. This week will have a holiday on Monday and chemo day on Thursday. So he still has not had a full week, which is a good way to transition for him.

His MRI for January has been postponed for about a month. His vision seems to be the same which is good, not deteriorating and his eyes look more balanced when looking at him. Thank you for your prayers and we praise God for blessing Gage!!!

Tuesday, January 1, 2008 7:24 PM CST

Happy New Year!!! Gage starts his new Pre-K on Tues, Jan.2! This mix of preschoolers and pre-K's go Mon-Thurs each week for only half the day. Gage will be going in the afternoons. Please pray for protection from germs so that he can stay in school and learn those first academics!! He will have all kinds of helpers for him, OT, PT, extra helps for his limited vision, speech--all there during the classroom time. We're praying that all that the school board says they can do will really happen and be a great experience for him and Karlee, too!!

Gage is officially a cousin now--Uncle P & K had their baby girl early on Dec. 19 in FL and mimi and K are visiting this week plus a convention there for K, too! Three of our relatives are either having surgery or in the hospital this week, too. Please keep our family in your prayers if God brings it to your mind!!! Happy New Year to all!!!

Tuesday, December 25, 2007 0:22 AM CST

From Terri (Mimi):
Merry Christmas to all our friends and prayer partners! A big big thank you to all the nurses and doctors who have partnered together with God and our family to lead Gage to a place of normalcy!!! Praise God for his abundant blessings to Gage! An early Christmas gift to our family was the birth of Uncle Paul & Aunt Kelly's baby girl, Jadyn Rae, in Florida last week!!! Special prayer is needed for Grandpa "E", Gage's great grandfather who has been hospitalized since Oct.30 and will be spending Christmas in Bethesda Naval Hospital still in ICU. He is making progress, just slowly and we pray that it continues so that he is well enough to go home in a couple of weeks!! Luke 2:14 "Glory to God in the highest, ...."

Tuesday, December 25, 2007 0:22 AM CST

From Terri (Mimi):
Merry Christmas to all our friends and prayer partners! A big big thank you to all the nurses and doctors who have partnered together with God and our family to lead Gage to a place of normalcy!!! Praise God for his abundant blessings to Gage! An early Christmas gift to our family was the birth of Uncle Paul & Aunt Kelly's baby girl, Jadyn Rae, in Florida!!! A special prayer is needed for Grandpa "E", Gage's great grandfather who has been hospitalized since Oct.30 and will be spending Christmas in Bethesda Naval Hospital still in ICU. He is making progress, just slowly and we pray that it continues and he is well enough to go home in a couple of weeks!! Luke 2:14 "Glory to God in the highest, ...."

Saturday, December 15, 2007 11:53 PM CST

Just a quick update to say that the new medication for Gage's mood disorders has worked for the most part. It has only been a week so it should keep improving. Still hard to deal with around the edges. Now he seems to have another runny nose. He hasn't even started school, so it is worrisome. He had a treatment this past Thursday and blood counts were good, weight is almost 42 lbs, and a full 43 inches tall! We're trying to get ready for Christmas and hoping that Gage will enjoy the day more this year. He usually can't stand the wrapping paper noise and gets out of sorts very quickly. Will update more in a couple of days.

Wednesday, December 5, 2007 11:04 PM CST

We had the treatment day last Thursday and some lengthy discussions begging for help for Gage's rages and fitful behaviors that have escalated out of control the last 2-3 weeks. The meeting did not produce the results we wanted so came home empty handed and let down again. So Karlee made an appointment w/a local Behaviorist which will be Dec.11 and we saw our local favorite who gave him a prescription for something to calm him down. Please pray with us that it will work and not be detrimental to Gage's health. We were desperate and he has never been on any drugs besides the chemo & Avastin treatments plus Protocel (which is non-toxic). Had not wanted to go to herbals because they imitate the natural hormones in his body and wanted his body to produce all that it could on its own, which so far seems to be producing except for this quite irritable behavior on/off every day.

He has a couple more appointments to prepare for entering the school system and has passed the other evaluations fairly well. As you can guess he does not write yet, but was asked to draw things and very boldly scribbled across the page bearing down with all his might. Then was asked to write his name. He said, Oh OK, changing his mannerisms leaned over and very gently scribbled something small just like an adult would write his/her name in cursive! Just an example of how things are done his way around here!!!

We have talked to a local family who just received a diagnosis for their son, Gunnars, 7 yrs old, with a brainstem glioma. Please pray for wisdom and healing for them as they decide on treatments. Psalm 20:1 "May the Lord answer you when you are in distress..."

Saturday, November 24, 2007 10:42 PM CST

We are very thankful at this season for Gage's continued good health among our other blessings! A lot has happened to him since last Thanksgiving when he was on Vinblastine--just a little push in the port once a week. The world seemed fine for him, looking very healthy then, but a couple of weeks later he had to go off that chemo and rely on Protocel 23 totally which did break down his brain tumor. However, the spread as it broke down gave him severe problems by February 2007. So in March we went to DC again and a miracle happened for him. He was allowed to follow a study on Avastin/Irinotecan which has not been released for children yet, and he's had amazing results which continue today.

Gage's Nov.13 MRI was stable and a tiny tumor spot at the bottom may have disappeared. His cold is finally over and he had his regular treatment last Thursday. After about 3 days, his vocabulary increased quite a bit so hopefully that is a sign that a good bit of shrinkage occurred!

We have a big meeting Monday to set up an IEP to get him entered into regular Preschool in the public system in our town with lots of support and hopefully an aide for him as his vision is limited. Once he is in a new environment once or twice, you would never know that he has such limited vision. But when it is all new, he can stumble or not see things right in front of him plus his depth perception for steps and uneven walking surfaces is very bad in a new place. Also, his mom is looking for an evening job so she can get back on her feet financially. Lord willing, Gage will stay in this good stability and will stay well in a school situation. His Pre-K class this fall led to a 5 week cold, but that was an awful bug that is still going around town. After missing so many weeks there and us having to pay for it too, his mom decided to check into other options again.

Treatment day is also this coming Thursday! We greatly appreciate all your prayers! "Give thanks to the God of heaven. His love endures forever." Ps. 136:26

Wednesday, November 7, 2007 10:58 PM CST

It's been a rough week, even with not getting chemo treatments, Gage has been on a terror streak. We finally dropped the cold meds that were giving him some bad side effects. His appetite was finally more normal today. It has taken almost 2 days to get the side effects out of his system. Maybe tomorrow, Thursday, will be better. Something has given him overly sensory issues; like clothes itching--won't keep on his winter coat, can't stand the cuffs on turtlenecks or sweatpants and obsessive over lost little pieces of paper that he likes to carry. His fingers tingle from the chemo so he usually carries something small and different every couple of days which must help his hands feel better. We're just praying that his tumor stays in check because he's had to miss the last treatment. He has an MRI scheduled for Nov. 13, then regular treatment on Nov. l5. We appreciate your prayers for our daily routine and for Gage's health!

Saturday, October 27, 2007 9:27 PM CDT

Saturday: Gage's cold is a little better--finally. He still has such a chapped face, but is eating better too. This is such a bad bug (almost 4 weeks now), please keep him in your prayers that it will clear up quickly. He has been zoning out several times a day also. We've read that brain tumor kids tend to do that when another infection is present in the body. We don't want him on any other meds if at all possible, so we're praying that this will pass quickly. This Thursday is his regular treatment day, so praying that his ANC blood counts will be high enough to get it and the cold cleared up. "Be of good courage, and He will strengthen your heart, all ye that hope in the Lord." Psalm 31:24

Wednesday, October 24, 2007 7:50 PM CDT

Last week was a busy one with two full day trips to Nashville. The ophthalmologist's visit concluded that "the good news" is that he doesn't need glasses. That is only good news because he would probably break them and not wear them! However, that means that his eyesight cannot be helped by glasses. The dr. saw 3 other brain tumor patients that day and said that Gage's optic nerves looked the best and not very pale in comparison to the others. He, like all others, thought there is still a chance that more vision will return. So we are still at the same point where he is basically blind except for some light being noticed in the Left eye and seeing only from the center inward on the Right eye. The dr. could not verify anything on color blindness. After the latest treatment, however, Gage seems to be able to differentiate the basic colors again.

In other news, Gage still has a cold and it has now become a full blown upper respiratory infection with a bad right ear also. Karlee took him to the local ped. dr. today and got an antibiotic and Zyrtec for the nose. He has a terrible chapped face. He missed all his school this week plus a field trip and still hasn't been able to go to his own class at church yet. At least this is not treatment week and, Lord willing, he will be well enough next week to continue.

A week of rain here has ended the local drought and brought on a bad case of cabin fever at our home esp since we are having major renovation of karlee & gage's bathroom. So it is double trouble with noise and not many places to go with such a bad cold! Thanks for your prayers!

Sunday, October 14, 2007 11:38 PM CDT

From Terri:
Gage still has this lingering cold, his chapped face is a little better, not sure if he will be cleared up enough to go to Pre-K school on Monday. He had to miss church on Sunday because of it too. This is a busy week for the little man. Ophthalomology appt on Tuesday, school on Wed, Treatment on Thursday, and OT at the new Hampton Phys. Therapy on Friday. He has so much to keep him busy that we have not even gotten him into the Music classes that we thought would be good. He is humming little bits to himself while he plays now, so songs will be right around the corner. His attention span for playtime is longer now, and a great blessing. We have one more meeting soon to line up his speech therapy and are trying to get it arranged during his school time. He seems to just say whatever is on his mind, and is very conversational now. The normal r's and l's are hard for anyone but family to understand but almost everything else is recognizable to others outside the family!!

Thursday, October 11, 2007 12:46 AM CDT

From Terri:
Gage's chemo last week went well, altho we could tell he was coming down with a cold. He slept nicely thru the treatments and did well. We bumped into a mom and her son who has leukemia there that we hadn't seen since June, so that was nice to catch up with them. Gage has been cranky since the weekend this time and today being a week from treament is his "lowest counts day" and boy, did he act like it this morning. He is still getting over a cold and his nose and down past his mouth on one side are all chapped. He has such sensory problems from the chemo that he doesn't like the feel of anything different, so it is hard to get lotion on him to fix him up!! He's had to miss his new occupational therapy sessions and has a busy week next week, so won't be going until next Friday. Next Tuesday, Oct.l6, we see the head ophthalomogist in Nashville for his eyes and the 18th is his regular treatment day in Nashville. Thanks for your prayers!!

Wednesday, October 3, 2007 10:06 PM CDT

From Terri:
Gage has had a pretty good 2 weeks. He started feeling cranky the weekend after his last treatment instead of a week later. But it may be that the treatments were just working faster this time. We went to Cape Girardeau on Sept. 27 to the pediatric ophthalmologist that has monitored him from the beginning. It has been 3 months since we'd been there, but it was about 6 weeks later that he said he "couldn't see" and we determined that he was only seeing shades of grey and no color anymore. So we made the appt and after she examined him, she said there was a "remarkable difference and substantial change" in his good right eye. She said she thought that the swelling on the optic nerve had probably gone down about two thirds! Still anybody's guess on the color change. We do have another ophtho appt on October 16 at the Vanderbilt pediatric optho's, so will see what they say then also.

This Thurs, Oct.4, is treatment day again. We had bloodwork taken at home this week as usual to save us a trip to Nashville in case his counts are not right. But the Home Health nurse said he was changing jobs so Karlee is deciding what to do after October in that regard. There are no other fully trained pediatric nurses with that home group so we're not sure if we want to continue and let others "practice" on him.

Gage is also adjusting to his Pre-K and did very well this week and made a new friend today (a blonde!). He's very conversational and if you don't talk to him, he'll just keep asking you questions and keep things going. Such a change from just less than 2 years ago!!! Thanks for your prayers!!

Sunday, September 23, 2007 0:01 AM CDT

Thursday's chemo day went pretty well. Our regular doc was doing "inpatient floor duty" so Gage was not checked very well, but he is doing fine and they started his IV's early. He fell asleep and stayed asleep for it all. His ANC was very good again this week. He now weighs 37.4 lbs and, Praise God, he looks like he did last fall in the face and feels so solid thru his stomach!! On Friday, our D.C. doctor called to confirm that the MRI from 9/11 showed more shrinkage and the volume has been reduced 50 percent since the end of March!! What great news--we can only count our blessings and Praise God for this miracle!! Thank you to all our prayer partners, may God bless you for your faithfulness!!!

Wednesday, September 19, 2007 8:36 PM CDT

We're off for chemo treatment on Thursday, 9/20. We got the written report on last week's MRI and the tumor has shrunk again in width .7cm and in depth .8cm and stayed about the same in length! So at the appointment Thursday should get more details. Will post his weight and stats then! His little school has been rough this week, some acting out, hasn't started speech yet. Hopefully, in a couple more weeks he will be more used to everything. Have one eye appointment next week in Cape Girardeau and another in mid October at Vanderbilt.

Wednesday, September 12, 2007 10:24 PM CDT

Well, we almost had to cancel the MRI on 9/ll because Gage was sooo hungry and screaming throughout the house and throwing lots of things in his fits, but finally we knew he could eat a sno cone and the promise of that helped calm him enough to get in the car and on the way to Nashville. We will not let the staff book an appointment with sedation past noon again. Everyone's prayers got us through this one. We'll probably not know any results for a few days as our doctor's assistant is on vacation and she usually faxes the written reports to us early. Gage's next scheduled chemo day is Thursday, September 20th. His favorite nurse made a special trip in to see him and was able to go in while they got the sedation ready, so that really made Gage happy too!

Monday, September 10, 2007 7:41 PM CDT

Gage will have his next MRI/MRA on 9/11 at 4 pm. He has been having a great summer with the exception that he has lost his color vision. About 6 weeks ago he told us he couldn't see out of his left eye and periodically says he can't see but now we realized he means that he can't see colors, probably just shades of grey. So we have more eye appts in the future and the MRA part of the test on tuesday will help show if there is a change from May 21 when the arteries and veins were looked at in that MRA. Hopefully, this a temporary issue.

He has gained over 7 lbs. since March and now weighs 37 lbs., 1 inch taller, and looks filled out like he did last fall for Uncle Paul's wedding. He started Pre-K at Easter Seals this week and did fine on Monday. It will be 2 mornings a week and he will get speech there also. His physical therapy is over because it is not needed anymore. He is talking better every day, with new words and more clarity. He initiates conversations and, of course, jokes all the time with everyone. We are grateful for all the noise and commotion that happens every day!!!

Monday, August 20, 2007 10:47 PM CDT

Gage got his chemo last Thursday (8/16) and all went well, he actually ended up sleeping through his whole treatment again (this is without a doubt b/c of the bendaryl and zofran that they hook him up ahead of time to).
We are leaving to go up to Maryland on Tuesday (8/21) for Gage's doctors up CNMC to see him and to go through a full neuro check with him. While up there it will be nice to see some family and friends as well. We will be returning on home on 8/29 (it takes us 2 days to get there and 2 days to get back home). Gage's weight is steady at 35 lbs 8oz, and he is continuing to gain a little every week.
Please be in prayer for us that our drive will be safe as we will be driving all day Tuesday and half a day on Wendesday. I will update again when i get back home.

Truly,
Karlee and Gage

Saturday, August 11, 2007 11:40 PM CDT

Terri's note: Chemo day on Aug.2 went very well, no incidents and Gage slept until the very last minute of the infusion, waking up in a very cheerful mood. He and Karlee have both had a summer virus this week but the Lord has kept it from affecting Gage's appetite and no fevers or coughs, so we are very grateful it's no worse. They had the last Physical Therapy visit on Friday. His strength is completely back and possibly better than ever. This week he has been able to express in words for the first time that "he does not see out dis eye", pointing to his left eye. We thought he had a tiny bit of some vision in it, but he has been covering one eye then the other like he is testing it when he thinks no one is watching him. We are hoping that it is just him being able to tell us, and not something else worsening at this time in his eyes. The ophth'gist thought that he may be seeing 20/200 overall when we went in late June. Chemo day will be this Thurs, Aug.16, then on Aug. 23 will have a followup appt in DC.

Saturday, July 28, 2007 8:34 PM CDT

Alot has gone on since the last time i updated. Gage had his MRI on the
16th of this month and Dr. Packer from CNMC in D.C. called to let
us know that his scans look good! There is definitely not as large of a
srinkage like there was in May but it did
shrink a small amount which is so awesome! Due to the shape of the
tumor and the fact that it is not a solid
round mass they cannot measure and tell exactly how much shrinkage
there was this time, but it's all good considering
that it has not grown and it has continued to go down in size! God is
awesome, and what great and wonderful miracles HE can
perform!!

On Thursday July 19th we went back to Vanderbilt where Gage recieved
his chemo. All went well until about the last 10 minutes when
he started whining and complaining that his tummy hurt which was
followed by 4 bouts of throwing up. No one seems to know
why this happened and the only thing I can think of that I did
differently was to let him eat prior to getting hooked up. Hopefully
this will not continue to happen. I am keeping my fingers crossed!

On another note, Gage celebrated his 5TH birthday last Tuesday (7/24)!
It is amazing to look back and see how much my little
man has grown up and how far he has come in his short life. Even
through all the medical issues that Gage has faced and been through,
I feel so incredibly blessed!

We are going back to Nashville this coming Thursday (8/2) for Gage to
get his next dose of chemo. I will fill in everyone on how
it goes but please say a quick prayer for Gage that he will not get
sick this time and that everything goes smoothly.

Truly,
Karlee and Gage

Sunday, July 15, 2007 0:35 AM CDT

From Terri (Mimi, Gage would never say Grammy so now i'm Mimi):
Gage made it thru all the way to Friday going to VBS!! Yay!! The first day he lasted till 11:15 and was extremely hungry even w/breakfast just before going. Thursday was a late arrival and early departure and all the other days were just fine!! Remember, he's never been to any kind of class because of his low blood counts and the last 4 yrs of almost constant chemo and treatments--so this was a good practice week and esp good to be centered around the Word. Thanks so much for everyone's prayers that surely gave them a good week plus no illness!!! Gage had his manners with his teachers, "ma'm" and did well with the classroom time!! Monday is MRI day at Vanderbilt and then Thursday will be chemo and go over the results with the doc there. The following week will be Gage's 5th Birthday on July 24--can hardly believe it!! What a blessing!! Psalm 100 "...for the Lord is good..."

Saturday, July 7, 2007 10:47 PM CDT

Thursday's chemo went well, Gage's weight was the same as it was 2
weeks ago! I am so happy that he is finally keeping his weight on. He
ended up sleeping through the whole infusion and the whole drive home,
so needless to say he was up almost the whole night. Although I am
disappointed in the dr I now just have to think of him as Gage's drug
administer and not much more at this time. We will be scheduling more
appts in Washington DC to see Dr. Packer more
frequently, but I honestly feel it will be worth it in the long run.

Gage, along with myself (I will be chaperoning the whole time), will be going to Vacation Bible School at our church, on Monday, 9th-13th. I am going to ask everyone to please say a prayer for protection over Gage so that he can attend and not get sick from being exposed to the largest amount of kids that he'sever been
around. His immune system is lower than most
kids but he has been very strong and not as weak as he was with the other chemos, and of course I will be right there beside him to keep him from being knocked down by accident and to keep other kids from getting right up in his face for any reason. My whole family is very excited for him to be going and want it to be a good experience for him.

Thanks so much for your continued prayers throughout the many years.

Truly,
Karlee and Gage

Friday, June 29, 2007 0:22 AM CDT

Gage got his chemo last Thursday and all went well, his weight is now
32lbs 6oz! He slept through most of the 2 1/2 hrs that he was hooked
up which was a blessing. Every couple days now Gage tends to get very
irritable from the meds and low counts that cause him to not feel good
after about a week. He stays very busy throughout the day playing
outside, riding his john deer tractor, and playing with his neighbor
friend but he still gets one good nap in by early evening.
This past Wed (6/27) we went to see Gage's ophthalmalogist who said
that his left optic nerve is very pale but he is most likely able to
see things but they are just very very fuzzy, and he is slightly
nearsighted in his right eye. Hopefully as this tumor continues to
shrink he will regain better sight in his left eye. Gage is also
having physical therapy coming to the house 2 days a week to help him
gain more smooth running strength. Thanks for all your continued
thoughts and prayers and I'll get back to updating more often. I have
also attached a picture of Gage on his tractor that he loves to ride
everyday and his big baseball that he takes with him in the back of his
tractor!

Wednesday, June 6, 2007 0:01 AM CDT

Gage is continuing to do well and was thrilled to get back home! It is great to hear his little feet running throughout the house again. He is like a new little boy! We will be traveling to Nashville this Thursday for Gage to get his next cycle of Avastin and Irinotecan. This will be the first treatment with this chemo/drug combo at Vandervilt so hopefully all will go smoothly. I will update later this week to let everyone know how things went.

Truly,
Karlee and Gage

Saturday, May 26, 2007 0:41 AM CDT

Wow, what a day the good Lord brought us on Thursday! The volume of
Gage's tumor has shrunk 45%! I was totally speechless when the doctor
gave me the news. I had to think for a minute to make sure he was
actually saying that the tumor had shrunk, and then the happy tears
starting flowing! It has been 4 years of difficult and trying times
along with constant prayer that this tumor would shrink or deaden and
the day finally came. The previous numbers that the D.C. radiologists
measured were 9.1 x 7.8 x 7.9 and they are now 7.8 x 6.4 x 6.1. No one
knows if the tumor will continue to shrink b/c this is experimental,
but we are all praying that it will continue to without Gage getting
any bad side effects. Thank you all SO much for all your prayers for
Gage! God has answered them and gave Gage a miracle that we are so
thankful for!!

Truly,
Karlee and Gage

Friday, May 25, 2007 0:58 AM CDT

From Terri:
Karlee & Gage have fantastic news to share! She will update later on Friday as it was a long day Thursday, getting the results news, then the chemo infusion in DC. I am back home for Kathy's high school graduation on the weekend and will fly back to Maryland on Tuesday morning to help them drive back!! We're giving all glory to our Father God in Heaven!

Wednesday, May 23, 2007 0:02 AM CDT

Gage had his follow up MRI on Tuesday and did an awesome job. He only
asked for food one time and was happy, laughing, and trotting around
inside the waiting room wanting to help all the nurses. Unfortunately
due to strict rules that the hospital has, they were not allowed to use
his port a cath (located on his lower chest) to sedate him. I was
allowed to go back where Gage was given a wiff of anestesia and the
nurses then inserted an iv in his arm to give him the propofol which
sedates him. The MRI and MRA took about 1 1/2 hrs and Gage came out of
it great. He didn't even cry when he saw that he had an iv in his arm
(which is what usually happens). I will be speaking with the doctors
regarding the MRI on Thursday morning probably around 10:30 or 11:00.
If all goes well and the results of his MRI are good than my mom will
fly into the airport here and we will drive back to KY on Tuesday the
29th.

Gage is contiuing to improve and is now back to running and jumping! I
am so thankful for this! He is also eating well and is back to taking
little naps in the afternoon. Thank you Lord for continuing to shower
my little man with your unconditional love and to help him along in
fighting this battle. Thank you to all our friends throughout the
world that continue to lift Gage up in prayer. You all mean so much to
me and I cannot thank you enough!

Rejoice in the Lord always; again I will say, Rejoice. Let your
reasonableness be known to everyone. The Lord is at hand; do not be
anxious about anything, but in everything by prayer and supplication
with thanksgiving let your requests be made known to God. And the peace
of God, which surpasses all understanding, will guard your hearts and
your minds in Christ Jesus. Phil 4:4-7

Truly,
Karlee and Gage

Saturday, May 19, 2007 10:50 PM CDT

From Terri:
Just a quick note that Gage has an early MRI/MRA on Monday morning at 8:30 and they have to be at the hospital at 7:00 am. Please pray that all goes well. There may be different procedures and sticks for Gage, as we're not sure if they will use his port for the sedation. He used to get a whiff of anesthesia before putting the sedation in his arm the l8 months he didn't have a central line at Vanderbilt because the sedation burns as it goes in. Karlee doesn't know yet when she will be able to discuss the results with the doctors. Please pray for Gage's vision to return also. He may only have half of the right eye working.

Sunday, May 13, 2007 1:11 AM CDT

Sorry for letting such a long period of time slip by without
updating. Gage has been doing well. We are still dealing with his
angry behavior (growling,spitting,hitting,throwing things,scratching)
but those are minor considering the other side effects that this
medicine comes with thich praise the Lord he has not had.

Gage had an appointment to get his Irinotecan and Avastin on Thursday
(5/10) and all went well. His blood counts were 1220 and his weight is
still at 29lbs. 10oz. He is still eating okay but I am still trying to
sryinge the high calorie milk formula in him. I will say however, that
Gage can definitely run around the house now, and that something is
working to help him feel better. The doctors aren't sure why he is
having these angry outbursts but we all know that it is the chemo, and
since this is an experimental drug/chemo there is nothing that we can
do for the behavior other than give him Tylenol which does help him to
feel and act better.

We have moved to a nice 2 bedroom condo extended hotel with all the
amenities b/c of Gage's behavior issues taking a toll on family members
that we were staying with, but it has all worked out. Gage's MRI is
scheduled for May 21 at 8:30am and on the 24th I will review the
results with all the doctors and Gage will then get his next dose of
chemo that same day. My mom will be leaving this coming Thursday to fly
back to KY to attend my sisters graduation and will come back on the
29th and we will drive back to Ky.

Thanks to all of you who have continued to stick by Gage as prayer
partners. It is such a blessing to have you all praying diligently for
Gage and my family.

Truly,
Karlee and Gage

Rejoice in the Lord always; again I will say, Rejoice. Let your
reasonableness be known to everyone. The Lord is at hand; do not be
anxious about anything, but in everything by prayer and supplication
with thanksgiving let your requests be made known to God. And the peace
of God, which surpasses all understanding, will guard your hearts and
your minds in Christ Jesus. Phil 4:4-7

Monday, April 30, 2007 10:15 AM CDT

Just a quick update, Gage is continuing to eat well but unfortunately
this drug/chemo combo is making him feel awful. He is definitely not
the same little man he was before he started on this new protocol. He
is whiny all day, screams alot, and is very angry and has started
throwing things again. To make matters worse he came down with a runny
nose and slight cough yesterday afternoon. Fortunately it is slightly
better today after giving him some Tylenol and Benadryl last night
which the hospital recomnmended. I know that his symptoms could be
much worse but all this is very upsetting and is taking a toll on me
since I have dealt with this in the past when he was taking the other
chemos. I hoped that he would never feel this way again and that these
angry outbursts would never return but on a positive note, I am so
thankful that he is improving (increased appetite, his strength is
stronger, he is walking slightly better, and he can even run/trot for
short distances)!

Truly,
Karlee and Gage
Job 37:5

Saturday, April 28, 2007 2:13 AM CDT

Gage had his appointment for the Avastin and Irinotecan (or CPT-11)
on Thursday and all went very well. We were there for 7 hours but
during that time, Gage ran up and down the hallway for Dr. Packer
(which seemed to greatly surprise him since he was doing so poor and
could barely run when we first arrived in D.C.), he talked all the
doctors ears off and told them many stories, and we had no problem
getting his labs taken from his port! Gage was hooked up a little over
2 hours and slept through it all. He is such a little trooper and I am
so proud of my little man!

His weight is still stable (28 1/2 lbs) and his eyesight is still
limited, but I am praying that over time, this will return.
Unfortunately this chemo/drug combo is making Gage very irritated and
angry, but am thankful that he is not having any of the other side
effects, as they could be much worse. Gage is very homesick and misses
the family and our animals and now that my mom has gone back home for a
week, it has been even harder on him. Thanks for all your continued
prayers for Gage. This is just an uphill battle but with God on our
side we will win this battle and come out stronger than ever.

Tuesday, April 24, 2007 4:52 PM CDT

Monday Night:
Gage is continuing to do well, although a little more fussy due to the
chemo, and maybe some funny little "happy speech-centered" seizures.
We will have to discuss this alot with the drs this week. He had some
of these when on the Temodar, and they were side effects of that
chemo. So this may be the side effect this time too but we dont like
it and dont want him on anti seizure meds if it can be helped. He is
up most of the day with one long nap now.

Tuesday from Terri:
I'll be leaving Annapolis to go back home Wed. for a week around Kathy's prom and end of the month events. Please pray for Karlee and Gage as they will be doing the chemo/Avastin this Thursday on their own. Still no word on dates for the next tests etc. Lord willing, all will finish up so that we can all be home before Kathy's graduation! We're so thrilled at Gage's progress and good eating!!! Yesterday he weighed 30.0 lbs. Matthew 18:19

Friday, April 20, 2007 11:55 PM CDT

From Terri:
Friday and Saturday are low blood count days for Gage. That means impatience, whining alot, won't get his mind off something once he focuses in on something unreasonable, throwing things(Yikes!), etc. It kicked in on Friday night but gave him some Tylenol. We'll be using that alot if he has problems this time. We had a very short but great visit with Grandpa, who flew in for a day and a half. Gage has been homesick; we can't say "home" or it sets him off lately. The visit helped him, lots of smiles, even bigger than his usual. More of his core strength seems to have come back this week, running a little, even pinched me tonight!, etc. Please pray for the schedule of scans, next treatments, physical therapy starting up next week, and issues on the hospital using his port for the blood counts, get resolved nicely!! P.S. no bad side effects from the chemo so far, Praise God!!!!

Tuesday, April 17, 2007 11:07 PM CDT

All is going well here with Gage. He is doing much better and is cotinuing to eat 3 big meals a day and has gained at least 1 full pound! Last Saturday, Gage received his first dose of the chemotherapy Irinotecan which is infused over a 90 minute period. Gage whined quite a bit about being hooked up to an iv pole, but we got through the time by trying to distract him and taking walks in through the halls in his stroller. His eyes continue to move slightly and he can't see through his left eye and can only see partially out of his right eye, but he is doing well inspite of that. His speech is also improving and he is very expressive when telling everyone stories. Thanks so much for all your continued prayers.
Truly,
Karlee and Gage Job 37:5

Sunday, April 15, 2007 11:50 PM CDT

Sunday Night: Things went well Saturday. Will update more later on Monday!

Friday, April 13, 2007 8:56 PM CDT

From Terri:
Well, Friday's CT scan was good and Gage held real still for the scan. We could watch the radiologist thru a big window and the technician told us there was no bleeding! So we are off for the "new to Gage" chemo on Saturday at 10am. The researchers have found that the Irinotecan works well with the Avastin to shrink tumors. Please pray with us that Gage will not be affected by any severe side effects. One common side effect is diarrhea and low blood counts. His ANC was already only 1,010 on Thursday. It had been 1,980 two weeks before. Some children in the study have not had side effects and none had lost their hair from what we understand. Friday afternoon he was singing, and running in little spurts; but also testy in sudden outbursts and very impatient since taking the Avastin (at least it's not constant and we're sure it's the blood being constricted in his head). Romans 15:13 "May the God of your hope so fill you with all joy and peace in believing that by the power of the Holy Spirit you may abound and be overflowing with hope."

Thursday, April 12, 2007 10:43 PM CDT

From Terri: Gage did well with his second dose of Avastin on Thursday! A few glitches in the office, they don't take blood out of the port in the office or at the blood lab to get the counts, wanted to take it out of his arm. Of course, Karlee had to advocate for him and firmly say no. Half of the reason for a port is to not traumatize the child. So that took a while and they accomodated us up in the office. So from now on will have to get Home Health to Annapolis to do the labs a couple of days before treatment. Friday at 1pm is a CT scan to make sure there is no bleeding in the brain. He seems fine so far, praise the Lord!! If that is ok, then Saturday morning will be infused with the chemo to stop duplicating cells. The first two weeks had dramatic reduction in swelling or something that has brought Gage almost back to normal!!!
Job 37:5

Wednesday, April 11, 2007 10:25 PM CDT

From Terri:
Wednesday was a good day for Gage except he has come into the famous 4-
yr old "whine". Don't know if the wearing off of the Avastin is doing
this or is the normal transition time for it to happen in his life.
But all in all, a definite sign of normalcy even though it drives us
all crazy. We visited a friend, while Karlee worked out at a local
gym, and he just whined almost the whole time plus it kicked in again
tonight after dinner. But he is definitely making longer sentence
structure this week and is talking a little clearer, no change in weight
yet, and still eating well. Thursday's appointment at 10 am should be a
blood check, wait 30-60 min. for counts to return, then the 60-minute infusion of the second dose of Avastin. Then Friday is a quick CT scan at 1pm and if all is ok on
that, Saturday would be 90-minute infusion of a first dose of CPT-11 chemo (Irinotecan). We just pray that it works nicely as it has with other children and not caused the unwanted side effects of diarrhea, which i think would dehydrate him quickly. We are going to ask for all the preventatives so we have them on hand just in case. Praying for miracles always--terri (mimi to Gage)

Tuesday, April 10, 2007 10:22 AM CDT

From Terri: Easter weekend was very cold here, an inch of snow on everything Saturday am, went to an Easter Drive Thru on Saturday night and it was Karlee's turn for Sunday am church. Had a great dinner with all the relatives (he napped thru our dinner) and Gage, unknowing to me & Karlee, had peanut butter chocolate for his dinner!! That was a first, and of course was cranky by end of the night, but after a late nap, he ate a big meal at midnight!!! Monday, he ate all good meals and only had about 1 hr nap during the day. We thought he'd finally get his days and nights back on schedule but instead he had a deep nap from 7pm to 10 pm. When he woke from that nap, his eyes were really still again and he was playing nicely w/his toys for a couple hours before eating a big meal again at 2 am!! Maybe tuesday will be back to a regular day schedule!! We're so thankful to the Lord that he is feeling almost back to normal--playing, not sleeping all day, wanting to eat, has alot of grip and leg strength back (still weaker than it was)!!

Tuesday, April 10, 2007 10:22 AM CDT

Friday, April 6, 2007 6:05 PM CDT

From Terri: Gage is doing well, the Avastin seems to be working, a red streak on the whites of one eye and itchy eyes are signs of the blood vessels shrinking. He has been irritable on and off on thurs and on Good Friday, another sign of blood constriction. We went to ChuckECheese to break up the boredom because of the cold temps here. But Gage has had increased hearing sensitivity for about 4 weeks so with the high noise levels in there, we were only there about 40 minutes. If we dont get snowed out, we will take Gage to a church having pre-Easter activities, but if everything is outside, he won't last long. He is continuing to eat 3 meals plus snacks each day, Praise God! Thursday, Apr.12, will be the next treatment of Avastin, then Friday will be an MRI, and possibly the new chemo on that Saturday. We have not been given times for friday and saturday yet. Happy Easter to everyone, He is Risen indeed!!!

Wednesday, April 4, 2007 2:09 AM CDT

We cancelled the plans for today and headed to the cherry blossoms before the predicted cold weather blows in here. Thank goodness we didnt get lost and it was so worth it! The trees were not their brightest pink color but they were absolutely gorgeous. Gage was not happy when we got the perfect parking spot, but my mom and I got some great pictures and the breeze was blowing the loose blossoms all over like snow. It was great to be able to not think about the hospital and dental scenes. The weather was perfect and beautiful today, sunny, breezy and temps around 80.

Gage's eyes seem more still today and he was feeling strong enough in the late afternoon to kick his big red ball outside a little bit. He ate 2 good sized meals today and one smaller meal. My tooth is still healing up, and unfortunately I still needed to take the pain meds a little today, and I have even been able to spend some time with a couple of old friends from my 9th grade year when we were living here.

Tuesday, April 3, 2007 0:09 AM CDT

Monday started off pretty rough with my pain medication wearing off as
I got to the dentist and finally had the root canal. Gage was very
good in the waiting room with my mom and they were able to leave after
they started working on me. Thankfully, I was not allergic to any of
the procedures (I am allergic to ALOT of medications) and with new
pain med prescriptions I was able to sleep the rest of the day.

Gage is doing much better today, he had 3 regular type meals, and was
talking alot and happy, singing to us and to his new videos that my mom
got from the church library here, and he also went out in the sun
today to take a walk in his wagon this afternoon which he enjoyed. We
may buy a new scale this week so we can track his weight better like we
did in Paducah, I just dont want any surprises. Gage actually looks a
little better through the middle tonight too. Thanks for your
prayers!

Truly,
Karlee

Sunday, April 1, 2007 10:53 PM CDT

April fools, what a day it has been.... it's not a toothache, its a
root canal! at least there are dental clinics that will answer on a
Sunday here and I was able to get some prescriptions right away. I
guess I will either have a root canal or have the thing pulled out
Monday a.m. at 10:45. I'm still not a believer in bad luck but the
timing on this is bad. Yes, it could be worse if it was near a
treatment day for Gage but at least it won't interfere with anything
for him. He is still doing ok, is happy and talkative when he wants to be up, but
that is not very often. He basically just wants to be laying down, (he
says that "I just tired" when I ask him if his head hurts, etc.) I'm
still syringing his enriched milk formula regularly as he doesnt want
to eat much but I am happy that he is still the same weight.

the New York surgeon emailed late Friday that he and his neur-oncology
team were going to review Gage's scans on Monday and he would call me
after that. I am also going to see if we can get physical therapy
lined up here in Annapolis as we had just gotten it started in Paducah
to keep his muscle tone good the week we left.

Truly,
Karlee and Gage

Friday, March 30, 2007 4:17 PM CDT

We had a long day on Thursday but Gage was a great patient and a
trooper through it all. After sleeping almost all day and night on
Wednesay, he was ready to go on Thursday. It was nice seeing aides and
helpers who we have known on the other visits to CNMC. It was not very
crowded and they were able to get Gage's blood drawn through his port
with out us going to another floor and having to wait for a long time.
After about an hour in there, we had another hour to kill to wait for
the counts and labs to be done. Lunch sounded good to Gage and we were
able to relax and see the tallest pear trees ever outside the glass
walls of the cafeteria.

Gage fell asleep in the stroller while we finished up at lunch and a
Concierge helper that we knew came to see us in there too. It was then
back up for the big wait for his meds etc. It was almost another hour
and we finally went in for the infusion, got pre-medicated with an IV
of benadryl and then when they brought out the Avastin, the nurse was
double checking and said that it went by weight and it ended up that
they had it too strong. Gage is not a normal weight for his age
anymore and that's what had been ordered. So we said there was no way
we would let him get that and it had to be corrected, which involved a
two hour wait again. He ended up sleeping bec of the benadryl and of
course woke up just when the correct dose finally arrived. Gage was
very calm and still woozy a little, so I took him for a short ride in a
wagon while hooked up and then they gave us a quiet separate room and
he sat quietly for the rest.

We were able to leave at 5:30, and of course there was lots of
traffic, stopped for gas in Annapolis and got some yummy Boston Market
take home food and the van wouldnt start--we had a dead battery!
Unbelievable. At least we were at a gas station, close to "home" and
it ended up that a very nice guy had cables. This was after we made a
non responsive call to AAA for a tow, talked to a cop in the food shop
who wasn't allowed to jump cars, plus another nice man who didnt have
cables. So finally at 8:30 pm we got home safe. Needless to say, I
think we were all exhausted by the time we walked in the door. At
least we were not stranded for long and were in a very convenient place!
Thank you God! AND another plus was that Gage was not fussy, and was
very patient about it all.

Truly,
Karlee

Wednesday, March 28, 2007 7:06 PM CDT

Today Gage was feeling a little better each time he was awake.
Basically he and i just slept most of the day and my mom took care of
phone calls and lining things up with the hospital. Gage is going to
start on the Avastin tomorrow if all his blood work comes back ok.
We'll be leaving at 830 am EST and will probably be there most of the
day. Please pray that Gage eats well while we are there and that the
drug doesnt give him bad side effects while there. They say that the
infusion (90 min for the first time) can give them heart palpitations,
profuse sweating, and possible diarrhea early or later in the week. He
really can't afford that, so we are praying that these side effects
will by pass him. Thank you all for all your continued prayers and
your encouraging emails.

Truly,
Karlee and Gage

Tuesday, March 27, 2007 11:36 PM CDT

My mom and I were very quiet and tense as we went to DC tuesday
morning and then the traffic of course backed up and we were 15 -20
minutes late to meet with the neuro-sugeon at 9:30 and he was scheduled
for surgery on a little girl we met the day before at 11:30. The
family of the little girl actually followed the surgeon from Ohio to D.C. b/c they are so confident in him. We knew if we were late it would
cut into our time to talk with him. Everything ended up working out
very well, he stayed longer than we thought he would and really
explained alot of things to us. Having to make such a heavy life
affecting decision weighs on you more than you think until you have
actually made the decision. We really felt your prayers today, thank
you all so much.
Everyone came to the conclusion of trying a new drug in DC for 6-8
weeks, and if it works we will go back to Vanderbilt to continue
there. If it doesn't, there will be surgery here to get out as much of
the tumor as can safely be done. It is only given by infusion once
every 2 weeks, after 2 doses of Avastin (starves the new forming blood
vessels feeding the tumor) then CPT-11 (a chemo) is added to stop the
dividing cells. It is a Phase II protocol and they had one
"spectacular" response in a local child who had a very similar but
slightly smaller tumor than Gage's. We're praying that we too get
such a great response!

Truly, Karlee and Gage

Monday, March 26, 2007 11:57 PM CDT

We took 2 days to get to D.C. and were able to stop in Roanoke over night where I was able to see my best friend whom I have known since 4th grade. So that was nice being able to see her and her children. We saw Dr. Packer this morning (Monday) and the concierge services showered him with gifts gallor, a nurse in the neurology clinic even gave Gage a 2 wheel bike with training wheels that is the perfect size for him!! We came home to Annapolis this afternoon and went back to D.C. later in the day to talk to another doctor. I have still not decided what course of treatment I am going to use yet, b/c they both have serious side effects. The doctor said that Gage has minimal sight out of his left eye and might only be seeing out the right side of his right eye. The good news is that Gage has not lost anymore weight which I am very happy about. My mom and I are going back to D.C. tomorrow morning to talk with the surgeon (Gage will be staying home since he is so weak). Please PLEASE pray for Gage, he is the love of my life.

Truly,
Karlee and Gage

Friday, March 23, 2007 10:58 AM CDT

We have decided to leave tomorrow (sat) and go up to Children's National Medical Center in Washington D.C. to get a second opinion from Dr. Packer and his team and the neurosurgeon. Gage is just to weak and I will not allow him to keep declining without something being done, whether that is surgery, chemo, etc. i don't know yet. I don't even know if they would be able to go in and take part of this tumor out without causing major problems. You would think b/c it is larger that it may be easier to take some out, but we will see. So, today is going to be quite hectic getting all our bags togeither and packing for a trip where we have no clue how long we will be there. I have also sent Gage's information, MRI reports, some scans up to a doctor at NYU that has done surgery on many children (we have actually talked with there parents) with these deep seated tumors without causing major problems. He has not gotten back with me yet and he is not in the office today, but someone in the office where he works said that he should be getting back with me on Monday. If it ends up that he thinks he could easily get to the tumor without causing problems than we may drive up there from D.C. also.

Thursday, March 22, 2007 6:14 PM CDT

The first day of Spring is usually hopeful. It�s so beautiful in Paducah. Decisions, Decisions. How do you decide on what may potentially give your child a debilitating permanent disability? More chemo won�t cure, it was only to give time for Gage to grow and develop then get to this point because the medical community has no real cure. Sometimes radiation works without leaving you a paraplegic or blinded or wiping out the whole endocrine system, sometimes surgery works w/o leaving a useless arm or leg or blind in one or both eyes because they nick the optic nerves, sometimes Protocel works and makes the whole tumor disappear w/o any side effects. But God�s will and time is what decides these things really. How to know the mind of God and how to live with your decision once you go forth with it, is the question today.

Thursday, March 15, 2007 8:28 PM CDT

Monday, 3/12/07
Gage had a good weekend, was able to go outside both days as it was much warmer and he felt stronger. He has had more fluids the past several days, so we think that makes him feel better. He is eating at every meal now due to the Hydrazine Sulphate, which I now give him 3 times a day. Grandpa (my dad) will be out of town for business most of the week so it will be harder on Gage when he starts asking how long till �aampaw� comes home. He is learning to tell time around everyone�s schedule (5 o�clock for when Grandpa comes home, 3 o�clock for K-K (my sister) home from school, etc.) He is just so much more pleasant now that the chemo is out of his system. We�re weighing every day again and praying every hour or more that he will keep this weight on and not lose anymore.

Thursday, 3/15/07
Gage is definitely feeling better, I weighed him today at 5 pm and he was a big 31.0 lbs.!!! Yay!!! Maybe a little solid measurement!!! He is eating about every 3 and a half to 4 hours now. He is very pale, but I think that will change whenever it warms up to where we can go outside every day. It�s been cloudy most of the time when he�s been awake this week so far. He seems a little stronger, wanting to hum when he wakes up and trotting down the hall, almost running. He has just been too tired to run much the last month. His eyes are still looking more still than last month.

Thursday, March 8, 2007 10:46 PM CST

Yesterday and today Gage has been eating better and getting at least 8 ounces of water into him (I have been syringing the water into his mouth). It's been about 5 days since he started eating more and his weight is still the same. His eyes looked better as well today. I am still giving the Protocel every 4 hours, have up'd the dose from 1/8 tsp to 1/4 tsp and instead of a double dose at night I am just sticking to the 4-6 hours and giving it to him at the 5 1/2-6 hour mark. Thanks for the encouragement from friends, I'm really needing it right now.

Wednesday, March 7, 2007 0:47 AM CST

Okay, so here it goes�..yesterday was an emotional, disturbing, and draining day. We were in Nashville Monday to discuss the MRI report with Gage�s doctor and he says that even though the center of the tumor is basically dead, the outside of it is still slightly growing. He basically said to keep giving him the enzymes, Protocel and hydrazine sulfate (which we recently added to help his appetite, and is also known to kill tumors). He said any chemo right now is not proven that it would work and radiation could stop the growth or could make things worse due to main arteries being entangled throughout the tumor which could break apart and cause bleeding, etc. or the tumor could grow right through the radiation. So, he then goes on and starts talking about if something �catastrophic were to happen to Gage, would you want him to be intubated?� I found this to be shocking that he was talking to me as if he didn�t think Gage would be functioning within 8 weeks (which is when we will be back for his next MRI). I guess since he was seeing no emotion from me, he just kept on about all these �catastrophic� things that could happen until finally I did break down b/c I was so angry that he was talking about my son like that.

I have stayed so strong throughout these whole 3 � years, very rarely getting emotional with doctors, and I really think satan is trying to break me this time. We are not giving up, we are going to fight harder than before!

Gage is my life, my love, my little trooper, the reason I get up each morning, and I know that God has great plans for him as he gets older. I know there are so many of Gage�s prayer partners out there and words cannot express to you how thankful I am that you have continued to lift him up in prayer throughout these years. Please continue storming heaven with your prayers that Protocel and the other therapies will continue deadening this tumor and that it stops the outside of the tumor from growing and putting excess pressure on him or his brainstem area.

Truly, Karlee and Gage

Monday, February 26, 2007 11:49 PM CST

Here is an update/summary of what all has been going on with Gage:

Gage started on Protocel Sept. 9 along with the chemo, Vinblastine until December 28th, when we decided to take him off the chemo. He has now been on Protocel alone since Dec. 28th. His ANC (blood count) is around 2700, which is good. Since Christmas, he has lost about 4 lbs and is very thin, he feels flu-ish every couple of days while his body de-toxes out the tumor through his bowels, extra earwax, and sometimes thru eye styes and thru his hair follicles (very greasy hair even after washing). This JPA tumor was very large (the last measurements were 9.9 x 7.4 x 7.1) so it is taking some time to �lyse� out of his system. Just being patient has proved to be very hard, especially if he is losing weight and not having much an appetite. I have now had to resort again to syringing his old formula mixture into him as much as possible (his stomach has shrunk, and I have to make him stay in his chair to eat more than a couple of bites. He just has no desire to eat very much and he obviously feels full quickly). He finally weaned himself off bottles in Nov/Dec so that cut out about 24 oz/day and he doesn�t drink that same amount from a cup as most children would. He needs to drink more water to get more lysing to come out, but that is hard also. Every time he drinks any juice or milk, it always has something special in it like enzymes, BarleyLife, or glyconutrients plus he gets the Protocel every 4 hrs and a double dose between 11 pm and 1 am every night. It is only l/8 tsp in about l/4 tsp of juice. The protocel has a funny aftertaste so it is a challenge half the time too. We are still grateful that he is not on any kind of feeding tube or apparatus, his shunt is working fine, and his port is still accessible as well.

His speech is still improving every day (apparently part of the tumor affected the left side where the speech center is). Gage is able to say the days of the week, likes to count to 4 and sometimes l0, says all our pets� names around the house properly now, identifies all the pictures on his flash cards, and calls everyone in the house by the right names finally, plus more of course! He loves to pretend on his phones to call his favorite nurses and set up times to see them, play bank w/all his cards and fake money, and finally plays correctly w/the Thomas the Train set on his train table.

This Thursday is the MRI that me and my family have anxiously been waiting for. Since he�s been on the Protocel for at least 6 weeks without chemo, we want to see if there are more deadened spaces appearing. Sometimes when the tumor breaks up, the protocel can make a protein film that encases around the whole tumor and then starts to break down and dissolve out. The trouble with the MRI�s is that to the doctor/radiologists cancerous cells look bright white on the scans, but the protein shows up as bright white also. So it can look negative/bad just before good things start to happen, which is what we think the Jan.12 MRI showed. If the whole thing is pressing badly back on the brainstem, it decreases his motor skills and organ function.

We can only pray, Jehovah Rapha, the Lord our Healer!

We know that all your prayers are heard, and my family and I pray that it is the Lord�s will that this situation in Gage�s head just dissolves out by His great and Mighty Hand!

Truly, Karlee and Gage - Job 37:5

Sunday, January 28, 2007 9:58 PM CST

After lots of prayer and research, I decided (the rest of the family also agrees with me) to leave Gage off of any chemo or radiation and to continue him only on Protocel. I have asked for an MRI date to be set around the end of Feb early March and they should be getting back to me sometime this week with the date. I feel that the Lord has blessed us by allowing my family and I to see evidence that the Protocel is working and without the chemo in his system we are praying that it will work even better and that this tumor will �lyse� out of his body. God is truly the Great Physician and I am so thankful that He led me (along with my mom�s constant researching) to the Protocel. As this tumor dissolves we are continuing to storm heaven that it will not block/affect any of his functions as it dissolves out. Gage still needs to gain back weight since he has lost a couple of pounds. Thank you to everyone who continues to pray for Gage. I would love for you to sign the guestbook as I don�t get out very much to see many of you.
Truly, Karlee Job 37:5

Saturday, January 20, 2007 10:50 PM CST

As most of you know, Gage had his MRI on Friday Jan 12. We were notified of the results a few days later, and unfortunately it is what we had thought but hoped would not happed. Gage�s tumor has grown slightly and even though the middle of it has broken up/deadened more, the chemo he was on, vinblastine, is not an option to take anymore according to the doctor.

We had a consultation with the doctor on Thursday (1/18) and he said just about we thought he would. He had contacted the doctors at D.C. Childrens and some other doctors and there is no documentation on anything that works for sure for his type of tumor even though it is a �low grade tumor�. (the new measurements are 9.9 x 7.4 x 7.1) I know this is large but he is very much normal except for his speech being behind a year). I honestly feel like I am on a roller coaster having to deal with all this. It is my choice from about 5 things to choose from. (radiation, 3 kinds of chemos that may or may not work but for a few months, or do nothing). Of course, I will not �do nothing�! My family and I are not in tears this time, but weary. Please pray for wisdom for me in making these decisions.

Lately Gage has been staying awake for 2 hrs then he will lay down and nap 2-3 hrs. Although I have never mentioned this before, I am continuing to give him the Protocel 25 (which he has been on since Sept 7). No one is sure if it is the enzyme formula working extra hard in his body to dispel the tumor (sometimes before the tumor starts going away it will spread out a little more and have a puddle effect) or the extra size of the tumor giving him too much pressure that is making him feel like not doing anything. PLUS, he wont eat
much, he is very forceful in not eating any more than he wants at any
given time.

So this is where we are at, researching the options, waiting
for the Lord's wisdom to fall on us to direct in which path to go now, and trying to think of creative ways to get nourishment into him, etc.

Ro. 12:12 "Rejoice in hope, be patient in affliction, be persistent in
prayer."

Truly,
Karlee and Gage

Saturday, January 6, 2007 6:30 PM CST

Just a quick update to let everyone know that Gage was not able to get his chemo as planned this past Thursday (1/4). Unfortunately Gage�s ANC came back on Wednesday (we have home health come out on Tuesday) and was only 527, the lowest it has ever been. In order to get chemo his ANC has to be 600 or more. He has been sleeping a lot, which has me a little worried but hopefully it is just this bug that he is fighting off and not anything tumor related. We had already talked to the doctor in the past about lowering his dose slightly since he had missed a dose last month due to low counts, so maybe they will go ahead and lower it next time to prevent this from happening again. This week and next is considered his 2 week break and they were able to move his MRI up to next Friday (1/12) and then we will start the next cycles first dose on 1/18.
Truly, Karlee and Gage

Tuesday, January 2, 2007 11:25 AM CST

Happy New Year to everyone and hope you all had a wonderful Christmas and that 2007 brings good health and healing. My family along with Gage and I headed to Annapolis, MD on the 23rd to celebrate Christmas with my mom's family which was long overdue since my grandparents had not seen Gage in several years. It was a lot of fun being able to watch Gage hug and love on everyone and to see him having a great time opening and playing with his gifts. We drove back home on the 27th and then the following morning was our weekly chemo day at Vandi. The one thing that was bothersome while we were away from home was Gage's appetite; he would barely eat anything and was distracted by everything new, which ultimately ended up with him losing a full pound (putting his current weight at 34.0lbs). His appetite has seemed to pick up a little more since being home, but he has since come down with a slight runny nose. Hopefully this will go away in a few days and not become a full-blown cold. This coming Thursday will be Gage's 4th chemo treatment which will be followed with his 2 week break. His next MRI will be on Jan 26th. Thank you to everyone who continues to be prayer partners for Gage. We are looking forward to having a great 2007 full of good health, healing and miracles by the Great Physician!

November 11, 2006 3:25 PM CST

Thank you all very much for your continued prayers for Gage's MRI this

past Tuesday. I want to give a quick update on the MRI and his follow-up appointment for chemo on Thursday.

We got word between appointments that the tumor is stable. When we were able to talk to the doctor on Thursday he thought that a small area at the top of the tumor was a different shade of color and that it was slightly smaller. Behind the tumor are 2 small fluid filled cysts which is more than likely tumor that is dissolving. (this is good news if this tumor/fluid is able to escape out, but however we will be watching it to make sure that they do not get any bigger) He kept saying that the tumor looks very heterogeneous (consisting of different types of material) and that we needed to watch it carefully. (of course!) He did admit that it has changed all over and the measurements are a little smaller, but he would not admit that it was a good thing that the coloring is different and that possibly some of the tumor is beginning to break apart. I am just thrilled that this thing is not growing and that Gage is doing great!

I am taking it as a good sign that our therapies and everyone's prayers are working. Since there was no huge change in the positive direction, he started back on the low dose chemo, vinblastine, on Thursday. Now that we have finished the induction phase, the protocol for vinblastine has changed to 4 weeks of chemo and 2 weeks off. The 2 weeks off are to let his blood counts/bone marrow recuperate after being blasted by this poison.

We're praying that this poison will not give him any nerve damage or future problems like so many are experiencing these days. Thank you again for all your continued prayers!!

The picture posted is from the beach and my brother Paul's wedding that took place Oct 21 at Jupiter Lighthouse in West Palm Beach, FL where he lives with his new wife Kelly.

Truly,
Karlee and Gage

September 16, 2006 7:46 PM CST

Things have been busy around here but I wanted to update so everyone would know that things have gone good the past 2 weeks. Gage was able to receive his chemo last Thursday (9/7) after getting back good lab results, and his labs this past Tuesday were extremely good, his ANC was 2800! Praise the Lord, so he was able to get his chemo this past Thursday (914) also. His weight this week was 35lbs 8oz and he has finally hit 40 inches on the height chart.

His main side effects on the vinblastine are irritability and headaches (he is finally able to tell us the back of his head hurts when we ask him). This is a ten week induction and then Gage's MRI will be on Nov 7th to make sure that this chemo is helping him and then we will go from there.

Thanks again for all your continued prayers. I have attached a couple of pictures -- Gage with his chemo duck that also has a port and hospital gear on that he was given from the nursing staff and one that was taken today at a park near by that was hosting a steam engine show. Truly, Karlee and Gage

September 2, 2006 10:05 PM CST

Just a quick update to let everybody know that our Thursday trip to Nashville went well but unfortunately Gage's counts were too low to receive his chemo (510, he needs 750+). We are not taking any chances of missing any other doses so I have signed up for Home Health again who will come out Tuesday to take his blood. If the counts are still low, we will administer neupogen here at home to help boost the bone marrow to make more white cells. Then he may be ready to take another dose by Thursday. He has come down with a slight cold now so that is probably what took his counts so low. Lord willing his body will be able to fight this off quickly. Thanks for all your prayers. Truly, Karlee and Gage

August 29, 2006 1:43 PM CST

Thanks so much to everyone who prayed this past Thursday for Gage. Everything went very well when Gage had his new port used for the first time since his surgery. A helper from the Child Life Support Office came up and had a life size puppet who also "had a port" and she and the puppet talked him into being real still for the procedures and it was surprisingly easy (he also had emla cream which is a numbing cream on the site 2 hours prior) . Now if only the medicines work that well, what a blessing/miracle that would be!!

We now know that all these chemo products are not a cure, but sometimes will stop the growth. We are still diligently researching for something else. Also Gage will start his "Preschool" at home in the next couple of weeks. We are adjusting to possible toxic side effects now from this new vinblastine med - muscle aches, violent episodes of temper, feeling cold when others are not, and frequently waking up in the night. For the past couple of days he has not had his usual appetite, which is not good due to the weight issues we have dealt with in the past and I am just praying that this is not the tumor but just a side effect of the chemo.

I know that this update is several days overdue, but things get crazy around here and playing with Gage and keeping up with him this past week along with researching other things have really kept me extra busy.

Thank you all for the much needed prayers.

Truly,
Karlee and Gage

Thursday, August 19, 2006 3:35 PM CDT

First, thank you to the many people who prayed for Gage and sent such encouraging emails leading up to his port-a-cath surgery! All went as planned on Thursday morning as Gage was taken back around 730 am for the surgery. His favorite nurse, Kevin, was there and really made the pre-op time go great. Gage was strolling around in the kiddie cars in the halls, waving to all the nurses and doctors, asking what everybody was doonin�. He was a bit �ornery� as the nurses said when he was coming out of the anesthesia but was given an extra dose of pain killer which helped keep him drowsy until Friday. He also received the �vinblastine� that afternoon. He was still groggy so it went easily, but I�m sure it will be more of a challenge next Thursday when we go for the second dose since the port might still be tender from surgery. Gage�s counts were almost the lowest they�d been in the last l7 months (ANC 850). If the ANC is 750 or less he cannot receive the chemo that week. Needless to say, we will have to be extra cautious.

The other chemo has not yet left his system and will probably take a few weeks. Normally this is his cranky, mood swinging, destructive week�and we are seeing that. We�re praying that it is just the normal side effects of the Temodar and not his tumor growth affecting him.

Again, thank you all so much for your prayers. I know that God is the great physician and that He knows all things and I am just continuing to pray that He will lay His hand upon Gage and heal him of this tumor.

Truly,
Karlee and Gage

Thursday, August 10, 2006 3:33 PM CDT

I was woken up today (Thursday) by the doctor in Nashville with some upsetting news about Gage�s MRI that was done on Tuesday (8/8). Unfortunately the tumor has started to grow down towards the brainstem again. This was a definite shock since Gage is doing so well. We have a lot of decisions to make in the next week, as we will be heading back to Nashville on Monday to discuss options with the doctor. Gage will also have a possible surgery to have a port a cath put in his chest so he can receive an IV form of chemo. I was able to send Gage�s MRI disks (I get these each time he has a MRI) off to the doctors in D.C. and will be waiting to hear from them to see what they think is best.

On a positive note, Gage turned 4 on July 24 and we celebrated that weekend with an awesome Curious George party. Gage had fun opening and playing with all his toys and since then has enjoyed playing in his pool during the hot weather.

This has definitely been more emotionally and physically draining on me this time since I have dealt with this before and I actually thought that this wasn�t going to happen again if at all until he was much older. I will update again Tuesday, Lord willing. I will really appreciate all your prayers for Gage during this time. Truly, Karlee

Monday, June 19, 2006 2:27 PM CDT

It�s been a busy couple of months here. May�s chemo (week of May 8) went fine with the usual routine of having to convince Gage that it is helping make his head feel better. Unfortunately, Gage picked up a stomach virus May 12 that he ended up having for a few days that cost him to lose 3 pounds.

Our first Speech Therapy session was May 15th, which went okay. May 19th was his MRI followed by the appt to get the results the following week and pick up the chemo for his next round. This MRI showed absolutely no change from the January pictures; everything looks just the same. The January scans were the best ones with an overall �change in character� for the better. We were hoping for more improvement but we're very thankful and happy that it has not grown. He is talking so much more and adding to his vocabulary every day.

Uncle Paul came to visit the end of May/beginning of June. Gage gets so excited and has so much fun with him when he comes to visit us. As of this weekend Gage has probably gained back his lost weight. He still has a very irritable and destructive week just before taking the next chemo dose. It�s a delayed side effect which is also the week of his lowest blood counts; something about the low counts makes him feel really angry. We are in that week now and we will be going to Vanderbilt on June 29 and starting his chemo the day after that. His next MRI will be Aug. 11.

Thanks for continuing to be prayer partners for Gage! Truly, Karlee

Tuesday, April 11, 2006 10:56 PM CDT

I know that it has been over a month since I have updated, but I wanted to let you know that Gage�s �chemo week� in March went great. Thanks so much to our friends who came over on Tues and Wed to help out.
We were back at Nashville for our monthly appt/blood work on March 30. Gage weighed 36lbs 1 oz and he is 39 3/4 inches tall. He can now finally keep up a pair of regular �man jeans� where before he was only able to wear pants with elastic!! His ANC was at 1400, which is a little low for him since it is usually over 2200. His chemo week for the month of April was the 3rd � 7th. He did so awesome for the first 4 days (he was even asking to take it when I told him I was going to get it ready)! I was so amazed and so proud of my little man for taking it so well! The last day proved to be a little tough as it took 45 min to stop him from running away and saying no, but he has really improved over the months in taking all his meds.

Gage has been congested with a runny nose, some vomiting over the weekend, a low temp and a low appetite since last Friday, so since I had a consultation for a new pediatrician today, I went ahead and had the doctor check his throat, ears, etc. He has an upper respiratory infection, but thankfully just an antihistamine they gave me should clear him up.

The other thing that has improved is Gage�s speech. He is talking so much better than he was a couple of months ago. He is unable to put the endings on a lot of the words he says, but is saying new 3 �4 word sentences each week. We are going to start regular speech therapy at Vanderbilt now that he cooperates better with speech where before he would stubbornly clam up and not work with anyone.

Thanks so much for your continued prayers and for our little friend Heidi from St. Louis (she has an optic glioma) who visited with Dr. Packer and who is also now on Temozolomide, hoping that it will stop its growth.

Be sure to check out his new Easter picture and one of him in his big boy jeans!
Truly, Karlee and Gage

Monday, February 13, 2006 12:29 AM CST

It�s been a few weeks since I last updated, but I wanted to share the good news with you from Gage�s MRI which was done on Jan 20. The doctor at Vanderbilt has said, and I quote � the overall character of the tumor has changed�. The tumor itself is not as bright as it once was which is a good sign and there are also more necrotic spots, which indicates that these parts are deadening. I am very happy about these results and glad that we are making progress even though it is the tip of the iceberg. Gage is making good progress in his language skills! His January weight and height put him in the 50th percentile for weight and 25th percentile for height!! (2 years ago he was not even on the chart!!)

We finished his chemo week last Saturday, he missed a half dose by spitting it out on the first day and skipped a day in the middle (couldn�t wake him up enough to take it), but even though it was a struggle he took the other full doses. He currently has a cold, which we pray will clear up in the next day or so.

Happy Valentine�s Day to you and all your families. God has been so good to us�it was only a year ago that he was in another life and death situation with the hydrocephalus, switching hospitals, and having 2 shunt surgeries out of town. I am so thankful and blessed that everyone continues to be prayer partners with my family for Gage.

Truly, Karlee and Gage

Saturday, December 24, 2005 0:53 AM CST

Merry Christmas! Just a little note to thank all our friends for
praying so much for Gage and his treatments all this past year. He
gained all his lost weight back from the surgeries he had in
February/March and then hernia surgery in May and from all indications
the oral chemo is working. He now weighs 33lbs! This month he is
talking more, which is still garbled like a 2 year old but our family
all understand what he is trying to say most of the time! He is
still using his sign language as well. We think he is coming down
with a cold now, so please pray that nothing becomes of it.

We all really appreciate the prayer support that
keeps us going when the times are hectic, and Hope each of you and
your families have a blessed and joyous Christmas and New Year!
Truly, Karlee and Gage Buri and Family

Thursday, November 10, 2005 12:40 AM CST

Gage did great while waiting to get his MRI on 10/28, I was so proud of him and amazed at how well he did even though he hadn�t eaten since the night before. He was able to play in the little houses that they have in the waiting room and roam the halls in a police car. The MRI was on time and Gage was taken back at around 10:30.

Since being at Vanderbilt I have sent an extra copy of Gage�s MRI�s to Dr. Packer at CNMC in Washington D.C. to look over. The results from Dr. Packer and his doctor here at Vanderbilt are that the tumor has not changed in size, but there is some mild change in some areas that do not enhance, which means that these parts are deadening off and some small areas that are breaking up more. I am very pleased with these results but like everyone else who has a child with a brain tumor � we are always praying that they will shrink dramatically or go away completely.

Gage�s current weight is 31 lbs. 4 oz. This week is �chemo week� and so far Gage has done an outstanding job taking it! I have had no problems getting him to take it like last month, and yesterday he even laid on his pillow by himself and was ready to take it! Lord willing, he will take the next 2 doses just as well.

Thank you so much for all your continued prayers for Gage, it is overwhelming to know how many people are praying for him. God bless you all. Truly, Karlee and Gage

Sunday October 23, 2005 10:30 PM CDT

While at Nashville earlier this month Gage�s Temodar dose was raised due to him gaining weight (28lbs 5oz) from 115mg to 120mg and his ANC was at 840 which is not the best considering that below 800 you usually cannot get your chemo. This month�s chemo week (10/11 � 10/15) was definitely more challenging than last month�s, Gage knows that the �yucky medicine� helps to get the tumor out of his head, but for some reason he just did not want to take it. Eventually, I was able to coerce him into taking it, and he did well swallowing it down and not spitting it out.

We have been keeping busy each day, and on the weekend is when we go to the different farms in town, which Gage loves to do since he is such a big animal lover. This year he was able to ride a big horse by himself which was very exciting! We even went into a haunted maze made out of hay stacks (for little kids), he had so much fun laughing while we tried to make our way through it and I was even surprised when he wanted to go into it not once or twice, but 3 times! Unfortunately I broke my middle toe late Monday night when a 5 lb weight fell on it from up by my shoulder. Due to the bone punching a hole through the back of my toe, it has been extremely painful and hard for me to keep up with Gage this week.

Friday, (10/21) we went for Gage�s speech evaluation in Nashville. It went really well and Gage used all the words and his own sign language that he does here at home in front of the speech pathologist while they played with the toys. I was pleased with how it went and Gage was really good and only fussed when he got hungry, (not bad for a 3 year old being in a little room for 2 hours). Gage is about a year to a year and a half behind in his speech, but I am confident that he will continue to say new words like he has been doing each week. It will be interesting to find out what the report says when we receive it.

Next Friday, the 28th we will be going to Vanderbilt for his MRI. This will only be the second one since he started the oral chemo in March. I appreciate all the continued prayers for Gage and hope that you enjoy the new pictures that are posted.

Truly, Karlee and Gage

Tuesday, September 27, 2005 4:42 PM CDT

Just a quick update to let everyone know that Gage is doing great! �Chemo week�, which is what I call it, was 9/12 � 9/16 and Gage took it like a real pro. I was so proud of him! We talk to him about taking his �yucky� medicine the week before he is due for it and the days of, and I think he now realizes that it is helping his head to get better. He is still having the delayed side effects of the medicine: headaches, angry spells, and trouble sleeping through the night but it could be worse, and as long as this tumor is shrinking and deadening, that is the only thing that matters. On the other hand, Gage and I have been enjoying many outings these past several weeks, he is also saying new words each day and even said the letter �G� this week. Thanks for all your continued prayers. Attached are some recent pictures.

Truly, Karlee Job 37:5

Tuesday, August 16, 2005 4:01 PM CDT

When we saw Gage�s pediatric ophthalmologist in Cape Girardeau last month she was so surprised at how well Gage�s eyes were doing, and how little movement he was having in them. She even said that he more than likely will not need to have any surgery in the future since the nystagmus is very slight.

Gage�s 3rd birthday was July 24 and we threw a big Clifford party in one room and a Bob the Builder in another. Gage had a blast and enjoyed opening all his birthday gifts and playing with a little friend. He was even more surprised when he saw his new swing set outside with a Clifford swing on it just for him!

Chemo went pretty well last month despite Gage grabbing the syringe from me and squirting out half the dose on his face. We are on the next cycle this week and so far so good. Gage took it like a true champ yesterday and we have yet to see how it goes today. We are praying that he will do well this week and that everything will go smoothly.

This week Gage weighed in at 28 lbs!! He is getting a larger dose (5mg more) of chemo since he weighs more now. He is still having very cranky side effects by the third week, which is a common reaction in this kind of chemo.

It now seems definite that the tumor has delayed Gage�s speech by a year. Even though I am able to understand all his sign language that he creates and his little jumbled words, I will be getting him evaluated at Vanderbilt soon to see what the next step is.

Remember to check out the pictures too! Thanks so much for all your continued prayers. Truly, Karlee

Tuesday, July 12, 2005 1:43 PM CDT

Just a quick update to let everyone know that Gage has been doing
very good these past couple of weeks. The last cycle of chemo he
had (June 20-24) went well except for the last two days where
unfortunately he spit each dose out right after I had given it to
him. His weight is hovering right at 27 lbs. Gage�s pediatric
opthalmology appointment is this Wednesday in Missouri and then on
Thursday we will be off to Vanderbilt for his monthly check-up
before his chemo to get his labs, etc done. I have attached a new
picture of Gage in his pool, which he absolutely loves! This is the
first year in his life that he has been able to play in a pool and
splash in water, b/c previously he had a broviac /iv line which he
had to keep dry.

Saturday June 18 2:16 PM CDT

We are so excited to let you know that Gage�s MRI on June 3, made a definite decrease for the very first time! It decreased by 1.4 cm in length X .3cm in height X .8cm in width across the middle of his head! This confirms that the new oral chemo (Temozolomide) is working. He weighs 26 lbs., 3 oz. and is a full 36 inches tall. It has been a long two years of treatments and we all thank you so much for your prayers and continued support also!! Gage has been running now for about a month and seems to have almost all of his strength back in his grip along with his arms and legs. (Quite a difference from the end of January when he couldn�t run at all!)

This week starts round 4 of the oral chemo; which he gets each day, Monday through Friday. The tumor is still not back to the size it was in December, but we�re praying that many improvements will happen with this dose as did with the last one. Truly, Karlee and Gage Job 37:5

Wednesday, May 25, 2005 9:20 AM CDT

I apologize for this update getting out so late after Gage�s surgery. All went well with Gage�s hernia surgery and I have to say that everyone�s prayers were heard as we had the most pleasant experience. All the nurses were kissing and loving on Gage and quite surprised by his sweet personality and willingness to go back to the O.R. Gage was in pain after surgery, but was feeling comfortable after getting some pain medicine while recovering and on the car ride home. I had assumed that Gage would be out of commission for a couple of days, but was amazed that by the time we got home, he was running around and feeling his normal self.

On Monday we started his 3rd round of chemo which he took like a little champ, but Tuesday was very challenging with him trying to run away while crying out �no�. Please pray that he will take these next few doses without any problems and that this chemo will destroy this tumor. Truly, Karlee

Wednesday May 18, 2005 9:18 AM CDT

The time is finally here for Gage to get his hernia surgery. We will be leaving our house at 3:30am to get to Vanderbilt at 6:00 for check-in and then he will be the first case for surgery at 7:15am. We are so thankful that they chose Gage to be the first case since he cannot afford to lose any extra weight (current weight- 24lbs 15oz). Gage will not be able to have solid food/milk after midnight tonight but I�m pretty sure that he will sleep in the car the whole way and not fuss for any food. Although this is a �simple surgery� it still makes me nervous, but I know that Gage will be in good hands since the top surgeon from the urology department is performing it. Please pray for our safety on the road, as we will be traveling during very early hours, that Gage�s surgery will go well with no complications and that he will not be in bad pain afterwards. Thanks so much for all your prayers. Truly, Karlee Job 37:5

I have added some pictures of Gage and one with his new quilt that he received last week from the �Quilting Angels.�

Monday, April 25, 2005 8:24 PM CDT

Gage did such an awesome job while taking his chemo last week. He took it without spitting any out and was truly a little champ and I am so proud of him! This past Saturday we spent half the day in the Emergency Room due to a spider bite (nothing serious that an anti-swelling medicine and benadryl couldn�t fix, thank goodness.)
Gage is still waking up in the middle of the night for 2-4 hours at a time and eating a full course meal. So far this, frustration and irritability seem to be his only side effects. His current weight is about 25 � pounds.

On the EXCITING side, he been running some everyday and today he started jumping again while holding onto the side of his crib. Thank you so much for all your prayers, God heard them all and allowed Gage to have a much better week of taking his oral chemo. Truly, Karlee

Sunday, April 17, 2005 11:12 PM CDT

Gage had his appointment with the urology doctor on Friday (4/15) for his hernia. All went well and the doctor actually said that he was born with it and when he had his shunt surgery, the extra fluid that was/is draining out, pushed on it and caused it to become prominent. He will be having surgery to fix it within the next month.

On another note, Gage�s current weight is 25lbs. 4oz. He is doing well with eating but his appetite fluctuates depending on how well he feels. Gage starts the next dose of Temozolomide (also called Temodar) tomorrow (4/18). I have found that the easiest way for him to take it even though he did have some problems keeping it down due to the taste is to take it through a syringe mixed in apple juice. Please pray that he will take these doses like a champ and that he will be able to keep it down.

Each and every one of your prayers has meant so much, and we continue to pray that this tumor will die off and leave Gage�s little body. Truly, Karlee Job 37:5

Wednesday, April 6, 2005 10:53 PM CDT

Gage had an appointment at Vanderbilt Children�s Hospital on Monday, April 4. We were able to look over Gage�s MRI scans from 4/1 and talk with the doctor, unfortunately he had not received the previous scans from St. Louis and was not able to compare them, so he wasn�t able to tell us if it was still the same size. Gage�s current weight is 25lbs 5oz, he still has a cough/cold and is not able to take any antibiotics b/c it might interfere with the chemo in his body, so hopefully he will be able to fight this bug off soon. He will start the 2nd dose of chemo, (Temozolomide) on April 18th. He is still not feeling himself b/c of the cold and is still not able to run, and has also been getting up for 3 hours at a time in the middle of the night, which is a side effect of the chemo. On a different note, Gage has possibly developed a hernia, but we will know more when we go for the urology appointment on the 14th. Thank you for all your prayers and please continue to pray for Gage that he will get over this cold, and that the chemo will destroy this tumor. Thanks so much, Karlee Job37:5

Friday, April 1, 2005 10:22 PM CST

Friday, April 1 we headed to Vanderbilt Children�s Hospital for
Gage�s MRI which was scheduled for 10am. We ended up being delayed
for 3 hours, but the nurses were great and new riding toys in the
radiology room distracted him from his hunger. He also fell flat on
his nose and forehead in the play area/lobby, which caused a bloody
nose, but God protected him and he was fine in a short while. I am
so proud him, as he didn�t even fuss for milk/food the whole time we
were there. We're exhausted but so glad that it got done today and
that Gage was such a strong little trooper. Please continue to pray
that this tumor has not grown and that we will soon get the
news that it is no longer there! Thanks so much for all your
prayers. Truly, Karlee

Saturday, March 26, 2005 11:13 PM CST

Gage started taking the oral chemo temodar on Monday, the 21st. I can definitely say that it has been a challenge trying to get him to take it, as I have tried many different foods to put it in. I finally had to resort to putting it in a syringe with some juice, which even then has been difficult. 3 out of the 5 days that he took it, he threw up, and you cannot give another dose when that happens, so to say the least, it has been frustrating knowing that he has not gotten the full dose those few times he did spit up. We will be going for Gage�s next MRI on April 1. Please continue your prayers that this chemo will attack this tumor and that it will not grow anymore and that Gage will be able to lead a normal life without the possibility of it bothering him anymore. Thanks so much for all your prayers, it has meant so much to me to know that people out there are praying for him and praying that this tumor will leave his body. Have a blessed Easter. Truly, Karlee

Monday, March 21, 2005 4:20 PM CST

We had a very rough day at Vanderbilt Children�s Hospital on Thursday (3/18)
while trying to navigate throughout different buildings, b/c they
are not yet incorporated in the new hospital. Gage had his 2-week
follow up CT scan, blood taken, and had his stitches taken out. His
weight is down from 26 1/2 pounds to 24lbs 10oz. He didn�t
feel good or eat much all day, only a few ounces of milk and water.
At first I thought he was having tumor symptoms, b/c he vomited 2
times in the night, and was having trouble sleeping, but after
having his throat checked, (which gagged him and there went
the rest of his nutrition for the day) we found out that he has a
red throat. Gage is still very weak and is having trouble keeping
down liquids, I am trying to syringe pedialyte into him as much as I
can. We are hoping that he gets to feeling better and we are
waiting on the okay from the doctor to start his chemo. Thanks so
much for all your prayers. Truly, Karlee Job 37:5

Wednesday, March 16, 2005 9:23 AM CST

Thanks for praying so much for us all on Monday, we had a good visit w/the new doctor and staff but nothing was done. We are going again on Thursday (3/17) to Vanderbilt Children�s Hospital to have a follow-up CT scan done to check the surgeries� effectiveness and will meet again with the doctor and staff. Gage will have blood drawn, his stitches out, and if the CT scan looks OK, he will get the first dose of the oral chemo.

Saturday, March 12, 2005 2:01 PM CST

Due to our computer being in the shop, I was just now able to write
an update. We arrived home Sunday (1/6) from Washington D.C. Gage
is glad to be back home and is enjoying sleeping in his own bed and
being back in his environment. Gage will be starting on an oral
chemotherapy called Temodar, which is made for recurrent tumors. He
will take one dose daily for 5 days in a row (it can be taken in
apple juice) and will be checked at the end of the month at
Vanderbilt Children�s Hospital in Nashville, TN. where we are having
Gage�s case transferred to.

Gage is still having some walking/balancing problems, and is still
not able to run. (has not been able to run since 1/21) which we are
praying will disappear as the fluid from his ventricles continues to
drain, but it may also take the chemo to help these symptoms.
We will be traveling to Vanderbilt this coming Monday so we can meet
the doctor who specializes in brain tumors and so Gage can take his
first dose of chemo where they will observe him for a while to make
sure that he doesn�t have any odd reaction. (The other doses will
be taken at our house). He will also have his stitches taken out on
the right side from the shunt surgery.

We still have a long road ahead of us, but I know that with God on
our side and Gage being the little trooper that he is, he will be
able to conquer anything that comes his way. We pray that this
chemotherapy will be the answer, and that it will destroy this tumor
and keep it from growing.

Thank you to everyone who continues to pray for Gage, you will never
know how much I appreciate it. Truly, Karlee

-- James 5:16-"Pray for each other so that you may be healed. The
prayer of a righteous man is powerful and effective."

Tuesday, March 1, 2005 8:38 PM CST

Gage went into surgery once again at 8:30 this morning (3/1) due to
the left ventricle not draining out through the right side and b/c it
was pushing into the space that the right ventricle had made when the
fluid in it had started to drain out. Soooo, the surgeons put in a
catheter from the left side to the right to drain it. They also had
to re-open the incision on the right to connect the two together. We
will see in the next couple of days if he will start to walk normal,
as it wasnt yet. Dr. Packer will look at the new CT scan which will
be done tomorrow morning to see how the tumor looks, and what we will
do next. We'll prob be here in hospital another couple of days. Gage
did come out of the surgery much better than the last since they used
the anestesia that he has had for all his other surgeries. Please
pray that Gage's body will get used to these foreign objects in his
body and that the shunts will not cause any infections. Thanks so
much for all your prayers and all your words of encouragement.
Truly, Karlee Buri

Sunday, February 27, 2005 4:39 PM CST

We arrived in Maryland on 2/23/2003, and saw Dr. Packer and his team on Thursday morning. He said that he looked great but after reviewing his MRI scans he said that he definitely needed to have a shunt placed due to a huge amount of fluid in his ventricles. Unfortunately Gage was unable to have the ETV surgery, where no foreign object is placed in your body, but due to his third ventricle being pressed up out of sight by his tumor, he had to have the vp shunt placed. Surgery was done on Friday, 2/25/2005 at 1:30 and all went well. We found out this morning (sunday 2/27) that the right ventricle is draining but the left is still the same size, so tomorrow we will have a second CT scan to see if the fluid on the left side is draining, or if it is unable to due to the tumor being in the way. If the left ventricle is still not draining, Gage will have to undergo another surgery for either a second vp shunt or to put the shunt in diagonal, where it would be inserted through both ventricles.
thanks so much for your prayers this week, and please pray that God will keep him from needing another surgery. His good health and weight are
very much in his favor and we just praying that the God will heal him from this tumor. thanks to all, Truly,Karlee

Wednesday, February 23, 2005 0:19 AM CST

We will be leaving early Wednesday morning to drive to Washington
D.C. to have Gage evaluated by Dr. Packer and his team due to him
still having muscle weakness in his trunk area, arms, and legs. He
has also been very lethargic, playing only a little and his eating
has cut back a lot. He has symptoms of hydrocephalus but some of
those symptoms fall under the category of the diencephalic syndrome
that he has too, so hopefully they will be able to determine what is
going on. If any surgery is needed we will also have it done while
in D.C.
We are praying that Gage�s problems are only due to the diencephalic
syndrome and that we can just get him started on liquid chemo again
and not any oral chemo where he would have to have a g-tube placed
in his stomach as he cannot yet swallow pills.
Please continue to pray for Gage that God will keep this tumor from
growing, that He will guide us in the right direction for choosing
the best and most effective chemo for Gage, that we will be able to
avoid any surgery, and for a safe trip to D.C.
Thank you all so much for checking in and I will update as soon as I
can.
Truly, Karlee
- God�s voice thunders in marvelous ways, He does great things
beyond our understanding. Job 37:5 -

Friday, February 18, 2005 4:51 PM CST

Tuesday, (Feb 15) we saw the pediatric neurologist in St. Louis due to Gage still not walking well. The result is that they think that this is all neurological. We are not happy with the options that our doctors have outlined.
We are deciding what the next step to do is. We have contacted a place on the West Coast and are having a phone conference tonight with the doctor there to see if they will take on Gage�s case. Please pray that this will be the answer we are looking for and for Gage�s healing.

Saturday, February 12, 2005 12:19 AM CST

Great news, Gage�s tumor has not grown any and there is no hydrocephalus on the brain! So, nothing drastic has to be done, however we have to find out why he is not walking well along with his other symptoms. The doctor said that it might be that he has post viral inflammation in his joints. We will be going back to St. Louis later this week to see several doctors to get to the bottom of this. We had a safe and exhausting trip back home late Friday night, but are relieved that the tumor is unchanged!! Thank you all so very much for all your prayers during this stressful time. I am so grateful to all of you for all your prayers, it means so much to me and my family. Truly, Karlee Buri -Job 37:5

Friday, February 11, 2005 2:45 PM CST

As I am writing this, my mom and I are at St. Louis Children�s Hospital having an emergency MRI performed on Gage�s brain. He is not able to run, will not crouch down, his eyes are slightly faster than before, he is starting to have a slight head tilt, he is very wobbly and off balance, is walking into things, and has had a lower energy level these past couple of days. Something different is happening, so we are hoping that the MRI will not show anything too drastic. We will be meeting with his doctor and the neurosurgeon around 5pm. Please keep us in your prayers. Exhaustion is high as we've already been in the ER at St. Louis children's hospital for 6 hrs on Thursday and over-night w/all the lights and noise on the floor here awaiting the MRI.
It is very upsetting that his doctor didn�t just tell us to come in or up his MRI when we first told her about him not walking well over a week ago. (Within the last several days the other symptoms popped up.) We also found out early January when we got the MRI report from his December MRI that the tumor had actually grown � inch in the past several months. I was equally concerned about this since I found out by reading it myself and the doctor not telling me, and then saying that everything was good to go on getting his broviac out. She said last night there may be a cross signal that the tumor could block that affects walking; or if the MRI is basically the same as before, it could be a virus in the hip joint; but he is so wobbly like he was before and cant see good which is concerning.
As you pray today please remember Gage in your prayers that this is not anything to serious and that the tumor has not grown anymore than it already has. When I have a chance, I will update and let you know what the doctors have said. Thank you all so much. Truly, Karlee ---- Job 37:5

Wednesday, December 22, 2004 9:51 PM CST

Just wanted to let everyone know that Gage�s surgery went well on Monday, December 20 for his broviac (IV line in chest) removal. We are praising the Lord for the miracle of Gage�s good health. I am so thrilled and thankful that Gage is finally a �free man.�

On another note, our good friend Jordan (7 years old) whom we had met in the hospital in St. Louis and stayed in contact with passed away December 21 from Neuroblastoma. Please keep his family in your prayers during this time.

Merry Christmas & Happy New Year to all of you and your families!!

Saturday, December 18, 2004 11:04 PM CST

Today, (Sunday) we will be heading back to St. Louis in the
afternoon to spend the night so we can be at the hospital at 6:30am Monday for Gage's broviac removal surgery which will start at 7:30am. Please pray that Gage's surgery will go well and that we will have good weather while driving to and from St.Louis. Thank you so much for all your prayers, you will never know how much it means
to me. I hope you enjoy the new Christmas pictures of Gage that are in the photo album.

Wednesday, December 15, 2004 3:28 PM CST

Friday, (Dec 10) Gage had his MRI at St. Louis Children�s Hospital. We had a hectic morning and the scan was delayed an hour and a half, but Gage was such a little trooper and only asked for milk a couple of times. We were able to take him upstairs to the HemOnc clinic where he was able to play with all the toys, which really took his mind off of eating. The scans of the brain tumor came back stable�same as the last ones, so I was very happy about that and so thankful to God for watching over Gage and keeping his tumor from growing. Thanks to everyone that has prayed for Gage over time. I am so thankful to each and everyone of you. May you have a blessed Christmas filled with many special memories. Truly, Karlee

Tuesday, November 16, 2004 10:14 AM CST

Just a quick update on Gage to let everyone know that he is doing really well. I weighed him on Friday (Nov 5) and he was 24lbs. 11.2 oz. He is finally starting to feel heavy when I'm carrying him around! He is continuing to eat well and is finally sleeping through the night, which is awesome! Gage is having his next MRI in early December, which will be a full three months since he has been off his chemo. Please continue to pray for Gage, that all his hormones will function normally, his speech will catch up to normal, his tumor will remain stable and that it will not affect him anymore. Thank you for all your prayers and support that we have received during this time. Truly, Karlee

Thursday, September 30, 2004 9:32 PM CDT

We finally arrived home from Maryland, Saturday at around 4pm. Gage was excellent in the car on the way there and on the way back, and he hardly fussed at all during the 15-hour drive, what a little champ he is! We arrived at our hotel in Annapolis MD on Monday night (Sept 20). Gage was very busy wandering around and investigating everything new. He especially loved running up and down the halls and walking up and down the stairs over and over! During our stay, we were able to see my grandparents and aunt and a couple of friends from our old church in Bowie, MD. It was great to see them and catch up on all the news.

Thursday we were up early getting ready for our appointment with the doctors at Children�s National Medical Center in D.C. While we were in the waiting room, the clowns came in and entertained the kids. Gage was not old enough to understand what all was going on last year when we were there, but since he is older now, he just loved watching them and had a blast laughing and trying to pop the bubbles that they blew! The doctors were so glad to see Gage, Dr. Packer even said that Gage looked like Prince Valiant with his wavy hair! Gage weighed 23lbs. 3 � oz and in a period of a year, he has gained the same amount as a normal 2 year old, so I was thrilled to hear that! Even though Gage�s tumor is very large, the doctors told us that by giving him another session of chemo after he already finished his 14 month protocol, that it would only raise the risk of side effects and because his tumor never shrunk with this chemo, that it would basically do no good to give him more carboplatin and vincristne. If something were to happen, which Lord willing it will not and the tumor started to grow again, we would try another type of chemotherapy. Dr. Packer also said that these tumors sometimes start to shrink on there own after not being active, so hopefully we will see that happen in Gage�s case.

After we finished up our appointment we decided to head on to the Public Relations office where we were able to meet Kellie Peacock. Gage is one of the children being featured in the Annual Report for the hospital, which is sent to all the major hospitals in the U.S. and Kellie is the one who has written Gage�s story for it. It was so great to meet her and we even got a sneak peek at what the report looks like. (It will be out in Dec.) When we were leaving the office, Gage waved bye and then turned around and ran up to Kellie and gave her a kiss! It was too cute.

The last stop of the day was down to the office of the Volunteer Services where we met up with Terry O. who was so wonderful during our stay in the hospital last year. It was so great to see her! They gave Gage a dog with a rain coat on that sings singing in the rain, and they even let me pick out a halloween costume for Gage, so we picked the doctor outfit since he likes to be �Doctor Gage� and carry around his stethoscope at home! She is the sweetest lady and I will never forget how much she helped us while we were in the hospital.

Since we were leaving to go back home Friday morning, we left the MRI�s there for Dr. Packer, Dr. Rood, and the radiologist to look at. They called back and there is still no change in size since the very first MRI that was taken in D.C. on Sept 29, 2003, after the first ten weeks of treatments. The part in the center of the tumor that looked as though it was deadening or breaking up has not deadened either. Tumors are firm when untreated and their pressure does damage, Gage�s tumor now is soft inside due to treatment which is allowing him to function normally. We are however, thankful that Gage�s tumor has not grown in size and that it is stable, and we will continue to pray that God will perform a miracle and that over time this tumor will begin to shrink on it�s own.

Monday, Sept 29, we went to see Gage�s pediatric ophthalmologist for a check-up appointment. She said that his eyes were stable and that his right eye is stronger than his left eye, he has also lost the peripheral vision of his right side. She also mentioned that if the slight movement of his eyes back and forth doesn�t clear up on it�s own, then by the time he is four years old, they could do a �simple� surgery to strengthen his eye muscles, which would keep him from having the nystagmus.

I want to say a big thank you to everyone who prayed for us during our trip to Washington D.C. I know that God heard your prayers and gave us a smooth trip there and back. It is amazing to know that there are wonderful people out there some of whom I know and don�t know that have been praying for us, you have no idea how much it means to me and my family. Please continue your prayers for Gage that he will not have to seek any other medical treatments.
Truly, Karlee
Job 37:5

Thursday, September 16, 2004 10:58 PM CDT

Friday, September 10, Gage had his follow up MRI. 4am Friday
morning was when Gage was not allowed to eat or drink anything
else. Well, God was watching out for Gage and he woke up at
3:50am. So, I ran down to the kitchen got him some cheese and milk
and Gage was able to eat and drink a little bit more before the cut
off time! Everything went well with the MRI as expected, and after
Gage woke up and was steady on his feet from the anesthesia we
loaded up everything and drove back home. When we got home the
doctor had already called and left a message on the answering
machine saying that the tumor had not shrunk and everything was
still the same size as his previous MRI�s.

A week before Gage�s MRI, we had already decided that no matter what
the outcome of the MRI was, that me, my mother, and Gage would leave
to go to Washington D.C. to get a �second opinion/end of therapy
review� with Dr. Packer and his team whom Gage was diagnosed by. I
will feel more comfortable and will probably have my questions
answered more completely and thoroughly in D.C. We were also able
to pick up all of Gage�s MRI�s on Sept 10 (including the one from
his Sept 10 MRI) which we will hand carry with us.

We had a scare late last night with Gage�s broviac. After making a
call to the hospital in St. Louis, we thought at first that we would
have to make a sudden trip up there to have it taken out. Needless
to say, after playing phone tag with the home health nurse, she was
able to come and check it out. Ends up, that the part of the tubing
that is deep under ths skin, came up right below the surface of the
skin, so that is why we could see the outline and feel the tubing on
his chest. So, praise God that it wasn�t anything serious and
hopefully we won�t have any problems with it.

Please continue your prayers for Gage and for our trip to D.C. We
will be driving the 14 hours in one day and it will only be my mom
and I taking turns driving. I will let everyone know how our trip
goes when we return. To know that people are out there praying for
Gage that I don�t even know, is so awesome. Thank you againfor your
prayers, it truly means so much to my family and me.

Monday, August 23, 2004 10:33 AM CDT

Friday, August 20 was Gage�s last day for chemotherapy treatments. I cannot believe that it is over. In a way it has seemed like these 14 months of chemo has been a long journey, but then again it hasn�t. Friday was my 21st birthday and knowing that it was also Gage�s last day of treatment was not only bitter sweet but also a great birthday gift. After he got hooked up to his chemo on his portable infusion pump he took off and was running around and riding on his car until he started to get a little fussy and irritable. After 1 � hours he was worn out and fell asleep for the remaining 1 � hours. He also weighed 22 lbs. 2.3 oz!

We received the MRI written reports while at the hospital and after reading them, they really don�t indicate any change since last September when we were in Washington D.C. That is where Dr. Packer told us that there was some liquification in the middle. The only reason we know that Gage is doing so well is his weight gain, increased appetite, and improved behavior. (slower metabolism, where before he was constantly active).

I cannot believe how much he has grown in this last year since he was diagnosed. Words cannot explain how proud I am of Gage. He brings so much joy into my life each and every day. God gave me the best gift ever and I know that He has great plans for Gage in the future. I am so thankful and blessed to have so many people praying for Gage. Please continue your prayers for him that this tumor will remain stable the rest of his life and that he will not need any further treatment. I will continue to update weekly on his weight gains and on his next MRI ,which is September 10.

Thursday, August 19, 2004 2:34 PM CDT

Gage did extremely well on Friday (8/13) while getting his chemo. Besides being fussy for about 10 minutes after he was hooked up to his carbo, and having to push him on his car, he slept the whole 3 hours. He is such a little trooper and is so brave for being so young. We were able to ask the doctor a lot of our questions and concerns since Gage only has 1 chemo left which will be this Friday (8/20). I am so thankful that Gage is finishing up his chemo treatments, but on the other hand I am also a little nervous. We have been so blessed that Gage�s tumor has not grown during the course of his treatment. Hopefully with all our prayers and the Lord above, his tumor will remain stable. Truly, Karlee

Thursday, August 19, 2004 2:34 PM CDT

Monday, August 9, 2004 3:06 PM CDT

On Friday August 6 we awoke bright and early and started our 3 hour drive to St. Louis for Gage to get his chemo. He was great in the car and slept most of the way there. When we arrived and checked in, Gage had his blood pressure taken and was weighed. This week he weighed 22 lbs 0.4 oz! Due to Gage getting pre medicated with benadryl and hydrocortisone he slept for almost the whole 3 hours he was hooked up and was only fussy for about 15 minutes. The nurse said that sometimes the kids can get a bad taste in the mouth so maybe this is why Gage gets fussy and sometimes throws up 45 minutes after being hooked up. He is such a little trooper and I am so proud of him. Today we went to the park and fed the ducks and walked around which Gage absolutely loved. Please continue your prayers for Gage as he only has 2 more chemo sessions until he is finished with his protocol. Thanks so much. Truly, Karlee

Wednesday, August 4, 2004 9:47 PM CDT

All went well on Friday with Gage getting his chemo. He weighed in at 21 lbs. 12oz. When we saw the doctor she told us that Gage only had 3 treatments left till his protocol was up. We thought it would go through October but I had lost track of time and on August 20 he will have his last chemo treatment. Gage brings so much joy into my life and I thank God everyday for the progress that he has made. This week his eyes have slowed down even more and his appetite has picked up more. On September 10th Gage will have another MRI. I am so thankful for all the prayers that everyone has said for Gage, it has truly means so much to my family and me. Please continue your prayers for Gage that will not need any additional treatments. -Karlee

Sunday, August 1, 2004 5:17 PM CDT

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----