Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Gage Guest Book          Photo Album Current Page Page One Page Two Page Three Page Four UPDATE: 8-23-10 On the medical front, Gage is still holding his own and doing well. Still up in the night one to 3 times depending on the day, no regular TIA's but if he doesn't nap and gets too tired, will have a tiny spell. Endocrine Dr. said his hormone levels seem good which is what we were waiting for before any new surgeries or anesthesia is given. Our Neuro-Onc dr in Nashville is transferring to Hershey Pa., so we feel like we are in limbo land again. Our fave opth'gist also left her practice to teach eye surgery, so just shows how long we've been in the game--but glad to still be here--thank the Lord!!! Please pray for our little friend, Heidi-almost 7 yrs old- will have the same surgery that Gage needs this Wednesday, Aug. 25th, in St. Louis! Birthday on July 24th--Gage had a great birthday and several friends stopped in, a fun Toy Story themed party! Thanks everyone for making his day fun!! His mom made a terrific Buzz cake as she always does!! quite the pro now!!! And Today is her birthday!!! Will try to grill steaks tonight and not burn up the grill & almost the house, as I did on 4th of July!!! lol..... ~~Psalm 100~~~ UPDATE: 7-20-10 We're so blessed to be celebrating Gage's 8th Birthday this Saturday, 24th. It will be a Toy Story themed small party!! He was supposed to start Horse Therapy but the heat index has been too high so hoping it will be cooler soon! The biggest smiles from Gage at Disneyland were during the Buzz Lightyear ride so have attached a picture of him shooting the bad guys!!! We have an Endocrine appt on July 26th and will decide after those results what to do about the narrowed arteries in his head. They caused the TIA on June 7th and a couple of tiny incidents the following week, but all has been fine since then. There are a couple of options for mom to weigh and decide but so far are on some helps for the blood flow, keepng well hydrated, and not getting over tired. God has blessed him!!! The options are not easy even though a cardio-vascular neurosurgeon thinks going into his head and making bypasses of the arteries is pretty simple because he does it frequently!!! Lately, Gage's BP was very low just with sedation and he's taking some meds to bring up the hormone levels that cause that. So there are many things connected that have to be just right. Thanks for your prayers and support!!!! Job 37:5 UPDATE: 6-29-10 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: 6-28-10 Gage & his family had a very nice trip to Disneyland and enjoyed Aunt KK?s graduation! Gage did pretty well, got his days and nights reversed for most of the week, but we survived. He was eating every couple of hours bec we had to up his meds due to the trip and from the TIA he had the week before. He did make it from about noon to 730pm at Disney, did 2 rides?Buzz Lightyear & It?s a Small World, 2 trips to the ?Wish Lounge? to rest in Alladin?s lamp-like cozy pillowed bed, ate at 3 restaurants plus toured thru the California Adventureland area. Our local friends really helped us have a great trip and cannot thank them enough, Michelle & Grayson!!! This was not a Wish trip, but Michelle had arranged for us to get permission to use the Wish Lounge & we?re so glad because he really needed it. Gage also got some Mickey ears and the famous Silhouette pictures. Gage also got to go up and sit by the pilot?s controls on our flight out before take-off so he really enjoyed that. We?re hoping to get in to the neuro-vascular specialist before July 12 (our appt. date) because he had another small episode this past Thursday & Sunday. We have to be careful about getting over-heated, keeping extra hydrated, and watching the posture of his neck while sitting also?all seems to be connected. Thanks for your prayers!!! ?Cause me to hear your lovingkindness in the morning, for in You do I trust.? Psalm 143:8 UPDATE: 6-15-10 Gage has a big day on tuesday, flying to see his auntie graduate from college and disneyland on friday w/some other brain tumor friends plus meet up with others who have been praying for him! Please keep him in your prayers esp for flying on tuesday and next monday as he had the TIA last monday night. The flights may or may not affect him, we are taking some precautions as the docs recommended but praying that all will go well as he has never taken a big 'just for fun' trip since Uncle Paul's wedding in 2006 and always been overly cautious about everything. God willing, he will feel fine. It will be fun this time to see him interact and talk with others on the planes as he could not when he flew so many times last spring to Houston for consults and the major treatment trips. Thanks everyone!!! UPDATE: 6-9-10 We were home by midnight on Tuesday! Gage is catching up on his sleep Wednesday and eating very well. He was very happy and singing to be home. It is so hot and humid here today, it is better to wait until later in the day to go outside anyway. We are gathering reports and fielding doctors' phone calls today. There was a narrowing of the internal carotid artery so we are investigating the cause from the various reports. They also said that the particular test he had gives a more severe assessment of it than other tests. A couple of doctors said it is likely not as bad as that tests says. Gage's arm veins were not in shape for the type CT that they wanted to do late Tuesday night for a better look and the place of occurrence in the brain of the TIA is not in an easily reachable location. Therefore, there would probably be no major action taken since he is back to normal. Thankfully, he is doing well and, Lord willing, this type of event will not occur again! Thanks so much for your prayers & notes!!! Previous: Out of the blue Monday night at 845pm Gage had a stroke-like occurrence. His face went numb/immobile on the right side and his right arm was limp plus he was trying to talk and could not. He then made a very sad face and tried to talk but teared up because he could only kinda say uhhhhh. Panic hit us and we went into full speed, mom was on her way home from a nice dinner out and in 10 minutes his speech came back and within an hour was probably ok but a little imbalanced/weak when he walked. Got to Vanderbilt at 1130pm and had CT scan, looked normal. Tues am had MRI which took more than double the time because his blood pressure was bottoming because his Cortisol levels are still low. They stop the scanner when pressures drop, bring up BP then continue the mri. Also had a cardio-echogram (ultrasound of heart) to rule out any "brett michaels" type of thing. All scans seem ok on first look. We are waiting to see 2 more docs then will go home, which will probably be tonight (Tuesday). Kinda like that song, 'let's give them something to talk about, a little mystery to figure out...." Thankfully, he is back to his old self, joking, saying, 'i'm stuck in this bed and i just want to go home!' He WAS stuck on an IV, lol. So they think it is a TIA bec no damage done but not sure why it happened. Thanks for your prayers!! UPDATE: 5-20-10 Stable is the Word!!! so happy also that the cyst at the back of the tumor site has decreased. It was a couple of doctors' opinions last time that maybe the dissolving tumor debris was filling the cyst and that it may go away! So prayers were answered and at least it is down!! Cysts can cause alot of problems which Gage does not need. He has gained 2 lbs and going for more!!! The tiny bit of meds daily for mood has helped increase his appetite which he really needed. It must have helped his other problems from last week, too. A couple of lab results were low, so will be trying to get in to the Endocrinologist soon. Ahhh, now we can plan some fun things for Gage for the summer!!! Thanks for being on our prayer team!!!! A great place to donate for May BT Awareness Month is www.plga.org (same as www.fightjpa.org) which has all its donations going directly into research on the type of tumor Gage has. We will be doing some fundraising for this group in the near future!!! UPDATE: 5-17-10 Thankfully, Gage's body has seemed to self-regulate itself and perhaps cleared up the problems he had this week. However, we were able to move up his MRI to this Tuesday, May 18, around 10 am, because there was a cancellation. We will back to go over the results with the Vandy Neuro-Onc on Thursday. Please pray for the hunger factor while driving & waiting for the MRI because it is later in the day than the last several scans. He won't be able to eat after 2 am. We so appreciate your prayers!!! "May the God of hope fill you with all joy and peace as you trust in Him, ..." Romans 15:13 UPDATE: 5-14-10 Gage has had a couple of rough days and not sure why. Couldn't hold his urine on Tuesday afternoon & evening, and was very angry and outburst-y on Wednesday so his mom got out the good old mood drug to help and he was better feeling, better eating, and only 2 small accidents. Tuesday am tho had his best speech class possibly ever! So hormones are fluctuating and praying it is just something that will pass and not permanent changes. Praying that his pituitary has not been zapped from the rdx and starting to not function--always an outside chance of that. His rescheduled MRI is now for Monday, May 24th. Thanks for praying with us!! UPDATE: 5-3-10 Well, as of Sunday, May 2, the basement and the first floor of the Childrens Hospital in Nashville was flooded and they said on the tv news there that they were evacuating the first & second floors of the hospital. Hopefully, that did not have to happen. The first floor is mainly the Radiology wing & waiting room & ER. But we did hear over & over that the sub-basement in the building was flooded. Sooooo G's mom called and postponed his MRI for Monday am. Mimi was traveling home from her weekend events in Nashville and the trip home was triple the normal time!!!! The town is devastated with flooding where it usually never floods & 15 to 20 inches of rain from Saturday to Sunday afternoon!!! They even cancelled schools for Monday. That whole area needs prayer! Gage continues to do well, his knees are sore from a fall on our hardwood hallway last week that bruised both knee caps, and a fall out in the park Saturday while he was running that gave him a big round scrape on one of the knees. Just the typical boo-boos that all little boys get on their knees!!! Just to be running is a wonderful thing in our book!!! UPDATE; 5-1-10 Today, Thurs April 29 - Ophth. Appointment in Cape Girardeau for regular eye checkup--1-1/2 hr drive each way Monday, May 3 - MRI at 8am in Nashville, 3 month routine check & Labs. Have to arrive at 7am and have 2-1/2 hr drive each way! May 13 - Follow-up to get MRI results in Nashville & do Cortisol labs. UPDATE: 4-15-10 Thanks to any of you who may have contributed to Grayson's quest for #1 fundraiser for Ronald McDonald Camps & prayers for a great day for him and all the participants last Sunday! As you can see in the picture he won first place!! We were so happy to be represented there in Los Angeles by Gage's Aunt Kathy!!! Gage can't wait to meet up with Grayson in June when we fly there for K's graduation!! We went to a great seminar today put on by our local community college that was all about technology to help the blind. It was very helpful and we will be investigating seriously to get some tools for Gage to help him see since glasses will not correct his vision impairment. We are also looking into service dogs for the future. Next MRI is May 3. It's never too early to pray for that!!! ~Psalm 100~ UPDATE: 4-9-10 Subject: We are now only $1,300 dollars away from being #1 Team Amazing Gray!!! If you know of anyone that will donate even $5, now is the time. We are so close to and 2 days left of fundraising. Please pass this on to anyone that may want to donate. Thanks for all the love. Please help our friends & donate if you can! Go to www.amazinggray.org/supporters.html, then click on the blue 'Team Amazing Gray' and you can donate to help our friend go over the top for donations to his Camp Ronald McDonald. Mimi & Aunt Kathy have met them in person, but Karlee & Gage will meet up with Grayson & family in June! We've been brain tumor support for each other for the past 2-1/2 years. Dear Songs of Love Family, Season 5 American Idol semi-finalist Ayla Brown will be appearing on the CBS Early Show tomorrow morning, Friday, April 9. Ayla will be shown singing and delivering a "song of love" for a beautiful 6-year-old cancer patient by the name of Hannah Lowe. The song will then be made available as a download for a minimum donation our web site at www.songsoflove.org so we can help many more children like Hannah. Ayla also happens to be Massachusetts Senator Scott Brown's daughter. We are elated to have her as part of our symphony of love and we wish her huge success as she pursues her musical career! Don't forget to tune in and spread the word! A Big Hug, John Beltzer President & Founder Songs of Love Foundation Gage's Aunt Kathy will be walking with Team Amazing Gray on Sunday morning! We love this family who've been a great source of inspiration and information as we've helped/prayed for ea other for the last 2-1/2 years! We also love the Songs of Love group and hope you can tune in or catch it on the web later if it is on there. A wonderful organization that helps cheer up so many sick children! Have a great weekend to all our prayer partners!!! UPDATE: 3-21-10 I'm sure everyone assumes that no news is good news and that is true. Gage has been well, naps a couple times a day and is still a very picky, small sized eater. But otherwise pretty stable and predictable. His mom is in a bodybuilding competition on March 27th that will take her out of town and it will be the first time Gage has been away from her for a couple of days. It is just too far a drive and there would only be one day in between driving back, so too much 'car' time for him. He goes to Speech twice a week and PT/OT once a week. He complains of his legs hurting around the knee area. We are still not sure if it is from the steroid use previously, or from radiation making his legs week. He's only on supplements now and one antibiotic for the elbow spot, which is almost cleared up. Thanks for your prayers!!! Job 37:5 UPDATE: 2-10-10 So.....the latest news from Gage's MRI is.......that his tumor has shrunk from 5.6cm down to 4.7cm!! Needless to say we are so elated and overwhelmed with joy! Last year at this time his tumor was 9.7cm and look where it is now! God is great! Snow, snow, snow, we have snow but not as much as all our friends up in the D.C./MD area. Gage finally decided to brave the snow late last week and take his shovel out to pound away at the big mound of snow in our front yard. It was so cute to watch him digging and scooping up the white stuff all while laughing as he got busy! This coming Thursday we are heading back to Nashville to get blood work done at endocrinology to see where Gage's cortisol levels are. This is very important b/c while Gage was in the MRI his blood pressure dropped to 33/60 which was in large part due to his cortisol being so low. We should get the results back in a week after they are processed and tested. We will also be meeting with the neuro-oncologist to get a basic neuro check and go over the MRI pics. Will update more in the next few days. Many thanks to all our prayer partners out there! We love you all and cannot thank you enough! UPDATE: 2-1-10 Just a quick update because this week is Gage's MRI on Thursday, Feb. 4th, in Nashville. It is for 10 am and he already thinks "i cannot eat" whenever you say the word MRI. Told him he would be asleep for most of the ride there during his regular "sleep" time! He did not want to play in the snow this weekend, 'too cold and too deep' for hiim. Speech class is Monday and they received approval for more PT at Hampton Phys Therapy held at the Easter Seal Center, so that will start up again soon. Thanks for praying!! UPDATE: 1-24-10 I will never forget that day where my world, my family’s and Gage’s turned upside down after he came out of brain resection surgery like a paraplegic. Little did I know that God had great plans in store and that Gage’s body would be healed nearly 7 months later. We really take things for granted in our life and now I have such a better outlook on things and what really is important in my life. We continue to be thankful to each and every person who has prayed for Gage and has been a prayer partner throughout the years. It is hard to believe that it has been 6 years since his diagnosis. We are so blessed to have Gage here and back to his normal self after so many months of having him in that state. Gage is continuing to thrive and live life to the best each day. We have enjoyed many cold days outside playing soccer and chasing Gage around as he rides on his john deere. On the rainy days we have gone to Chuck-E-Cheese where he will actually play the games instead of just wanting to collect as many tickets as he can. (this is a big step for him to be more patient and to stay on task for longer than just a minute or two). We are so excited that Gage has grown a ˝ inch taller which puts him at 48 ˝ inches tall!! We have an upcoming MRI on February 4th, followed by an endocrinology appointment to check his cortisol levels, etc, on February 11th. I will update later on the results of those. Please keep our wonderful friend Tammy Olsen and her 2 daughters in your prayers as this weekend was the anniversary of her youngest daughter, Briannah’s passing from a brain tumor into the gates of Heaven. 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- If you would like to add a page for your child, click on "Add A Child" below. Please be aware that once a child's page is added to this website the information becomes public. Please keep this in mind when posting information. It is recommended that you DO NOT post your full names or addresses unless using a post office box. We can not be responsible for who views these pages as they are open to the general public. We suggest a password protected page for optimum privacy. Need information? 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