Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Gage Guest Book          Photo Album Current Page Page One Page Two UPDATE: 11-16-08 So far so good! Gage has been taking his new oral meds since Nov.4th and generally has no side effects that we can tell. A couple of bloody noses and one that woke him up at 3am is about it! He takes it just before bedtime, so any nausea that he would have is not noticeable. We are praying that it is working the way it should on the inside in addition to the two alternatives that he is taking!! For some reason he still will wake sometimes between 4 to 6 am and want to eat and be up for an hour or so. From what we read in our online low grade glioma support group, it is also common with other children with optic chiasm/hypothalmic JPA tumors. This has made it hard on getting to school the last couple of weeks-- either his tumor changing earlier in October made him wake too early alot more days, and then now the new meds--who knows? But he's missed more early morning school because of it all. We appreciate your prayers!! Job 37:5 UPDATE: 11-5-08 Gage continues to do well with playing, OT, school and life in general. He is happy and gives great joy to his mom and the rest of us!! He took the first dose of the Tarceva last night before bed. It is once a day for 28 days then will add in another drug if he does well on this. The MRI from Oct.28 showed another increase and the DC team gave us larger measurements yesterday, which is distressing. We don't want to lose out on the shrinkage that tons of insurance money paid for on those expensive new drugs for the last 18 months!!! The new meds are not new to the world, just not approved for kids under 9 yrs old. That is why it is a Phase I trial, to get dosage that works best. Lord willing, these will help Gage and not harm him. A few other children have taken the Avastin after hearing about Gage's success, so we are happy he was able to encourage/help some others thru this. It gave him back his life in 2007! Thank you for your continued prayers!!! Psalm 91:16 UPDATE: 11-1-08 On Thursday the MRI written report was a bit of a shock to all of us as it had only been 6 wks from the last one. This was a "pre-new meds" scan to have a baseline report. That blasted tumor had grown or been pushed out 5mm's and 2 cysts were very pronounced and another new blood filled cyst appeared. The team in DC is meeting late Monday morning as they do every week and we should expect a call later in the day. They will either say to proceed on the new meds (which we already have) or who knows what. Karlee feels strongly that this is the way to go with the molecularly targeted drugs. They are oral and not chemo so it may be easier on his body. The first 28 days is with a tiny pill that we will either crush or try to hide in some food once a day. Then if he tolerates it well, another liquid drug will be added after 28 days. UPDATE: 10-30-08 The MRI day on Tuesday went well. They were exactly an hour late in taking him in the machine, but he handled it well for as hungry and weak as he was. A Child Life person showed up the last 45 minutes and played with him while we were waiting, which was a tremendous help. He had visited with his favorite nurse during the first hour we were there and the time was dragging and he was really whining until the new face appeared!! We overnighted the disk to our DC doctors and not sure when we'll hear from them as they have their regular meeting with the neuro-radiologist on Monday mornings. The scan looks like some old problems resurfacing to our untrained eyes. Haven't received the written report yet either. Gage is doing well though, praise God, and he had a great day at school today. Thanks for your prayers! Psalm 91:15 "He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation." UPDATE: 10-22-08 From Gage's Mimi: All went well on Tuesday with another Avastin treatment. He was cranky when we got home, but that is a good sign that it is shrinking things inside! He woke in the night from 4am-6am, kinda a regular thing now, and had a bloody nose, which has happened on Avastin also. It stopped quickly and he is off to school near 10 am. Still fussy, but will get some Tylenol if he still is when he gets home. No discussions with dr's yesterday. He weighed 58.8 lbs and 119 cm tall (46" something). Got some emails from DC, they are trying to line up a pre-Phase I MRI in the next couple of weeks. We're hoping it will be in Nashville. Thanks for your prayers!!! UPDATE: 11-19-08 It's hard to believe another week has gone by! The new meds are in appeal with the insurance company. It may be 3-4 weeks! Yikes! hard to stay calm with that news! We got in all the liquid forms of new things that we are giving to Gage now to keep things in check in the meantime. Now we have to get in the swing of giving him these several times a day. Also still taking Protocel 23, and now will be on the Ruta6/CalcPhos. The DC drs are recommending an Avastin treatment this coming week to keep the tumor stable while we wait for approvals (even tho they thought the Avastin was breaking thru according to the Sept.8th MRI). I think because Vanderbilt decided not to administer the new meds and the prescription was processed by the DC hosp, the pre-authorization was forgotten and therefore the meds were denied. Once something is denied you are forced to go thru the Appeal Process. Glad it's not immediate life and death situation, aren't you? In the 5 years of dealing with this, this is the first major obstacle w/our insurance. Overall, it has been wonderful and hopefully they will come thru in wonderful fashion very soon!!! Gage seems fine--since all the Avastin has worn off, he is not too cranky but his blinded left eye looks larger every day or so. It is not constant. Thank you for your prayers! Psalm 91:15-16 our local friends still need prayer: UPDATE: 10-16-08 Still waiting on the new treatment plan for Gage. Nothing was completed on Friday. We are going locally for his bloodwork but the order was not faxed to us yet. We have his prescriptions but they have not been approved by the Insurance company and we are waiting on the approval of an appeal. Hopefully, all will be ready some time on Monday. Gage is not taking well to the tiny homeopathic dissolvables that we want him to take. They are only the size of the top of straight pin head. We'll continue trying though. Also, Monday will be a school day for Gage and Physical Therapy in the afternoon. Thanks for praying! Gage is not taking well to the tiny homeopathic dissolvables that we want him to take. They are only the size of the top of straight pin head. We'll continue trying though. Also, Monday will be a school day for Gage and Physical Therapy in the afternoon. Thanks for praying! UPDATE: 10-10-08 We have missed a few updates. I have posted them below. Please take time to catch up on Gage's needs. From Mimi: Things are still up in the air for Gage's new treatment plan. The Vanderbilt hospital will not oversee the protocol, just found out yesterday, and that means that everything we do now will be through the DC Children's National Medical Center. It is a Phase I study using two genetically targeted drugs that have shown that they shrink tumors. They are not chemotherapy and are oral. One is liquid and the other is a crushable pill (Gage still does not "do pills"). So now we are still waiting on insurance approvals, and arrangements of prescriptions, etc., from the DC nurse practitioners. We are surprised by the action of our neur-onc at Vandy, you would think that after 3 years of knowing us that they could work harder for us. However, it is an overriding hospital policy that the doctor will not buck. So once again we are somewhat on our own to find cures for brain tumors. Every few months we are like the "Lorenzo's Oil" movie! We're also starting him on the Ruta6/CalcPhos homeopathy protocol that now has proof in the US that it is working. It's from a dr. in India and i've known about it since 2006, but had no definite proof back then. Now there is a Phase II study using it in Cleveland. Gage is fine and on fall break from school, enjoying October weather!! Please pray for him to be cooperative in taking all these new items (dissolvable tiny pills for the Ruta 4 times a day, coming up soon 28 days of the crushable pill, if that is tolerated well, then the addition of the liquid-each once a day). He is 57 lbs and 46-1/2 inches tall now!! We appreciate all your prayers!!!! UPDATE: 10-1-08 We are back safe & sound! Gage did come down with a little cold but with the Lord's blessings, good meds and cold care tea he's about licked it. Thankfully, it was not bad. Karlee signed him on for a Phase I Study that Dr. Packer is doing with Tarceva/Rapamycin, not chemotherapies but genetically targeted drugs. This will give his body a rest from chemo and will attack the bad cells from two different pathways. Everyone will be keeping a very close eye on things and if it is not satisfactory in any way, will go back on the Avastin which targets vascular components of that old JPA brain tumor. The assistants are still arranging things with insurance and timing of tests and start-up of the new treatment plan. We don't know anything yet. Gage is doing wonderfully at school this week and has a field trip to the Park on Friday. His class is going to walk but Karlee will drive him. His endurance is not that strong to walk there, play and walk back to the school too. Thanks to all who voted in the Project Brain Child attempt for funds. We missed it by 142 votes of being in the top 5. It was offline for a couple of hours too so the group is trying to appeal. So much for Childhood Cancer Awareness Month in September--kids are still dying and very ill--Lord willing, the cause will be found in addition to cures to avoid all this type of suffering! "I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11 THURSDAY, SEPTEMBER 25, 2008 10:04 PM, CDT Wow, thanks to all who said some prayers for our meeting with the doctors. It went well and of course I am still a little nervous, but hopefully this new drug protocol will work well as there is not much left to give him. Gage did great and was excited to have a mini reunion with all our nurse friends and the ladies from the concierage services. He is such a trooper and a little warrior for all he has been through. I will write more in detail about what was said today from the doctors at another time as I am exhausted and ready for bed. Gage and I did head over to the mall tonight which was able to take my mind off of everything and he did good with walking since we didn't have the stroller with us on our trip. Needless to say we were both wiped out and tired when we came home. "I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11 WEDNESDAY, SEPTEMBER 24, 2008 07:45 PM, CDT We arrived in Maryland around 1:30 pm after an easy drive from Roanoke, VA! We went straight to Great Grandparents house and visited for an hour or so then settled into our place for the next couple of days. Our "Big" appointment is Thursday morning at 10 am. Please pray for safety through the traffic and for us to remember all the questions we want to ask. We have a friend of mine from MD going with us too so that Gage will be able to play after the docs look him over and we can discuss things without him whining to go out of the room! That is a huge blessing by itself! Thank you all so much for all your prayers throughout the years. It is such a blessing to have such awesome prayer warriors for my lil trooper. Truly, Karlee Job 37:5 TUESDAY, SEPTEMBER 23, 2008 11:51 PM, CDT From Mimi: Day 1 of traveling went very well. Gage is a better traveler and was in his big boy Hulk underwear all day too and did great!!! One of Karlee's lifelong friends lives near where we overnighted and she was able to come visit us! Still researching other options and praying for a good consultation on Thursday in DC. Thanks so much for your prayers! One more half day of driving to go! Gage's Aunt KK is home for college quarterly break keeping Grandpa (Da) company. Happy new is ~~ Great Grandpa E is home after 11 months in hospitals due to a surgery mishap & Gage will be able to see him as they live in the DC suburbs!!! others in new treatments this week: Paul writes, "Every detail works to your advantage and to God's glory: more and more grace...more and more praise! So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, God is renewing us day by day." (2Co 4:15-18 TM). FRIDAY, SEPTEMBER 19, 2008 11:11 PM, CDT From Mimi: After finding out that the MRI of Sept. 8th showed growth/change, we talked the doctors into allowing Gage’s regular treatment last Thursday. Our thought was that it would keep something in his system until we could have consultations in DC and get some other treatment rather than just stop everything and allow some bigger growth. Gage handled it well and we were able to go over the MRI pictures thoroughly with the doctor. Gage weighed in at 57.4 lbs and is 46-1/2” tall. He looks so great from all outward appearances. But the scan shows that it is getting close again to the brainstem area and is a little deeper almost blocking the Third Ventricle which is at the bottom near the spinal cord. The doctor did say that if it does get blocked his two shunts would protect him. (Don’t we love shunts, they’ve been saving lives since the 1950’s or earlier!) We will be driving to Maryland this Tuesday, Sept.22nd, and arrive on Wednesday with the consultation at 10 am EST in DC on Thursday. We’ll head back on the weekend. Please pray with us about everything and for germ protection, too, because every time we’ve gone there, Gage has come down with a cold. It was probably from something airborne at the hospital. That is the main reason we haven’t gone back since Aug 07 for a routine neuro checkup in DC. Thanks so much for your prayers for Gage and for his other little friends suffering from brain tumors also. Paul writes, "Every detail works to your advantage and to God's glory: more and more grace...more and more praise! So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, God is renewing us day by day." (2Co 4:15-18 TM). FRIDAY, SEPTEMBER 19, 2008 10:30 PM, CDT From Mimi: After getting the news that Gage's JPA tumor had grown/changed on the MRI of Sept.8th, we talked the dr's into allowing him to get the regularly scheduled Avastin treatment last Thursday. Our thought was that even tho it was growing, we wanted to keep something in his system to not allow bigger growth until we could have consultations and get on a new treatment. We are driving to Maryland this Tuesday, Sept. 22, arriving there Wednesday and will have the consultation on Thursday. There are some other genetically targeted drugs that we will be discussing to avoid other extreme measures. He tolerated the meds on Thursday very well and got to see his favorite nurse from another floor, too. Gage weighs in at 57.4 lbs and is 46-1/2 inches tall. He looks so great and seems to be doing well from all outside appearances. On the MRI, things are getting too close to touching the brainstem again and growth was deeper to almost block the 3rd ventricle. The numbers were only 1 cm in one direction and .5 cm in the two other directions. Remember, that 1 cm is only about 1/3 inch. The Vandy dr. said that even if the bottom ventricle gets blocked his two upper shunts will protect him. (Don't we love shunts, been saving lives since the 1950's or before!) It's been a traumatic few days but we have to keep our faith and stay strong in the Lord. At least the bad weather that has hit all over the country has subsided. We still do not have land phone service in our area due to leftover IKE. We so appreciate your prayers for Gage and our other friends in this brain tumor world! Paul writes, "Every detail works to your advantage and to God's glory: more and more grace...more and more praise! So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life...we are being renewed day by day." (2Co 4:15-18 TM). TUESDAY, SEPTEMBER 16, 2008 02:43 PM, CDT From Mimi: We are in shock as we are having to make some more tough decisions for Gage. He is doing sooo well, but the MRI last week showed more changes than the DC expert wants to allow. Therefore, we will be going there soon but are wrestling about treatment for this week with the doctors. Please be in prayer for Gage, Karlee and the rest of the family as we make decisions. We will update very soon when we know more. Thanks so much for your prayers! Job 37:5 WEDNESDAY, SEPTEMBER 10, 2008 11:55 PM, CDT From Terri/Mimi: Where to start--Gage had his regular treatment last Thursday, Sept.4, like all the others and slept thru it as usual. Then had the MRI on Monday, Sept.6. He was such a big boy about not eating. We talked about it the day or so before and that morning he complained about it but didn't even take a sneak bite of anything when offered. He said, "No, they said I can't have anything!" So proud of him, i think he is learning at school that rules are rules. So, on Tuesday the typed MRI report was late being faxed to us so we were suspicious that something was wrong. The scan this time showed about 1 cm of growth or spread in the length of the tumor and about .5 in the other directions. Plus some fluid in the center of it and a thickening of the whole thing toward the front. We have to remember that 1 cm is only equal to about 1/3 of an inch. But it is upsetting to all that there is anything happening at all besides shrinkage. Hopefully, when our D.C. doctors look over the pictures they will not want to change any treatments for now. We don't expect any answer until next week. Also, there is a big chance that this change is happening as the tumor is flattening out and getting ready to dissolve out of the body. The alternative, Protocel, that he gets around the clock is supposed to do this and we've seen evidence in his waste products lately. Gage continues to look, act, and is eating and growing right on schedule. He is now 56.8 lbs and 46-1/2 inches tall. He also lost his other front tooth last week so he really looks like a 6 year old!! Thank you for your prayers! UPDATE: 8-30-08 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 UPDATE: 6-12-08 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" UPDATE: 6-2-08 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!!! UPDATE: 5-29-08 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!! UPDATE: 5-21-08 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!! UPDATE: 5-12-08 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 UPDATE: 4-30-08 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!!!! UPDATE: 3-24-08 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. UPDATE: 3-19-08 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. UPDATE: 3-12-08 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 UPDATE: 3-6-08 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!!! UPDATE: 2-18-08 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! UPDATE: 2-7-08 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. UPDATE: 2-5-08 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. UPDATE: 1-22-08 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!!! UPDATE: 1-3-08 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!!! UPDATE: 12-25-07 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, ...." UPDATE: 12-17-07 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. UPDATE:12-6-07 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..." UPDATE: 11-27-07 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 UPDATE: 11-08-07 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 healing. UPDATE: 10-29-07 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 UPDATE: 10-25-07 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! UPDATE: 10-16-07 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!! UPDATE: 10-15-07 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!! UPDATE: 10-5-07 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!! UPDATE: 9-27-07 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!!! UPDATE: 9-20-07 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 UPDATE: 9-13-07 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! UPDATE: 9-11-07 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!!! UPDATE: 8-21-07 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 UPDATE: 8-13-07 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. UPDATE: 7-28-07 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 The new picture is of Gage with our dog infront of our house. UPDATE: 7-08-07 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's ever 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 UPDATE: 6-29-07 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! UPDATE: 6-8-07 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 UPDATE: 5-26-07 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 UPDATE: 5-23-07 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 UPDATE: 5-22-07 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. UPDATE: 5-14-07 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 UPDATE: 5-1-07 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 UPDATE: 4-30-07 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)! I am attaching a picture of Gage and I when we went out to eat with a couple of girlfriends from middle school. Truly, Karlee and Gage Job 37:5 UPDATE: 4-28-07 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. UPDATE: 4-25-07 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 UPDATE: 4-21-07 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!!!! UPDATE: 4-18-07 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 UPDATE: 4-14-07 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." UPDATE: 4-13-07 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 UPDATE: 4-10-07 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)!! UPDATE: 4-7-07 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!!! UPDATE: 4-5-07 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. UPDATE: 4-3-07 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 UPDATE: 4-2-07 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 1045. 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 perky 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 UPDATE: 3-31-07 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 UPDATE: 3-29-07 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 UPDATE: 3-28-07 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 UPDATE: 3-27-07 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 UPDATE: 3-24-07 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. UPDATE: 3-23-07 Me, Gage and my mom are leaving Saturday for MD to have a consult on monday for gage in DC. I have also been in touch w/a surgeon in NYC at NYU Med Center that has done over l00 of his type tumor resections in career and does 6-l0 per year. He will be calling us on monday or tuesday. Not sure what will be done after we get there(surgery, new chemo, both, etc.) May go straight up to NYC or may stay in DC for something there. Just dont know yet. I'll update on the website every day starting monday.Even if you have never said a prayer in your whole life, PLEASE pray for Gage, all the doctors involved and us as I am going to have to make upcoming crucial decisions. UPDATE: 3-20-07 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. UPDATE: 3-13-07 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. UPDATE: 3-7-07 Okay, so here it goes...yesterday was an emotional, disturbing, and draining day. We were in Nashville yesterday 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 ½ 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 UPDATE: 3-5-07 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 3 UPDATE: 2-27-07 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 UPDATE: 2-23-07 Please continue to pray for Gage. He is loosing weight and seems to having symptoms from his tumor. Remember his family when praying. UPDATE: 1-29-07 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 ProtocelAs 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 Romans 12:12 - rejoicing in hope,persevering in tribulation, devoted to prayer,... UPDATE: 1-24-07 Gage is doing better, eating a little better, talking chattily again and more alert when he is up. She has made a decision to just keep him on Protocel only for the next few weeks and will be notifying the dr of that on Wed and asking for another MRI in about 6 weeks. Please pray that they accept that well, and the God's hand continues to heal Gage, as i know you have been doing!!!! Thanks so much!!!!! terri UPDATE: 1-21-07 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 happen. 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 a year behind). Gage's weight has also dropped since Christmas, he was over 36lbs and on Thursday he was 33lbs 4oz. 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 decide to do nothing). Of course, I will not "do nothing"! My family and I are not in tears this time, I am mad at this tumor and in fighting mode. 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 23 (which he has been on since Sept 9). 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 UPDATE: 1-6-07 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 UPDATE: 1-2-07 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. Attached are new Christmas photos. We are looking forward to having a great 2007 full of good health, healing and miracles by the Great Physician! ADDED: 5-30-04 Gage will be 2 years old this July 24th. Condition: Juvenile Pilocytic Astrocytoma Brain Tumor Comments:In June 2003, Gage was diagnosed with Diencephalic Syndrome caused by a Juvenile Pilocytic Astrocytoma Brain Tumor. It is benign and on a scale of 1 to 4, it is a slow growing 1. As Gage's mother, I knew that something was wrong when he was 4 months old. He wouldn't take a bottle easily, couldn't/wouldn't eat anything cheerio size and was extremely anorexia looking and very happy go lucky along with being very active. I had taken him to several doctors around town and even drove 2 hours away to Nashville and none of the doctors could find anything wrong with him. On June 20, 2003 Gage's eyes started moving horizontally and by then I knew something was seriously wrong. On June 25th we took Gage to see a pediatric opthamologist an hour and a half away who referred us to a pediatric neurologist who then admitted us to Southeast Missouri Hospital where an MRI was done and the results were given to me and my family. On June 27, 2003, Gage, myself, and Gage's grandmother were taken by air ambulance to Washington D.C.'s Children's National Medical Center to be treated under head neurologist, Roger Packer who invented the type of chemotherapy that Gage is getting. While there, Gage had a brain biopsy and two surgeries for a broviac catheter insertion. Due to the size of Gage's tumor (4x4x5cm), he is on chemotherapy using carboplatin and vincristine to help shrink or kill the tumor. Gage had 1 follow up MRI in D.C. which showed no change in the size but some liquification in the middle which is good. Each week Gage is improving and gaining weight little by little. His tumor is pressing on his hypothalamus, which produces the hormones that create interest in eating among other things. We were able to come back home to Paducah, KY after staying in D.C. for three months and we currently take a 3 hour drive one way once a week to St. Louis Children's Hospital to receive his chemo. On June 10, 2004 he will have his 4th MRI to see whether his tumor has shrunk or if it is still the same. So far, his tumor has stayed the same, as long as it doesn't grow I will be happy. Gage's protocol for receiving his chemo is 15 months and we only have about 6 more months left to go. Hopefully he will not have to seek any other treatment after he is finished with this protocol. Thank you so much for your prayers, it truly means so much to me. God Bless, Karlee Buri -Job 37:5-