Updates and Comments
Today marks 3 months since the day Noah finished his race. Our family went to Hawaii to get away for a bit and in Hawaii, we saw everything Noah painted. We wanted to eat at a hole in the wall local spot - and we we're lead to Ono Steak and... Shrimp Shack in Waimanalo. Soon as we finished ordering, Anthony noticed a picture and autograph of Mike Iupati #77 of the 49ers on the wall. Mr. Iupati gave Noah an autographed 49er jersey which is with Noah now. One of Noah's favorite songs, "Somewhere Over the Rainbow" sung by Israel Kamakawiwo'ole, started playing on the radio station soon as we took notice to the picture. The inside of the restaurant was orange and hanging on the wall was a lei, similar to the one Tita Maryann, Uncle Eric and his cousins gave him, before we all left for the trip. Everything about Hawaii was so Noah - such a little island boy. Today at 6:52pm we will release 5 orange balloons (1 balloon for each of us), in honor of our, precious Noah. Our family started this tradition the day of his interment and every 28th at 6:52pm, if you see orange balloons in the sky remember Noah and his beautiful smile.
We are deeply saddened and with heavy hearts to inform you that our son, Noah Stout, passed away at UCSF Hospital in San Francisco on Friday, March 28, 2014 at 6:52PM. As many of you know, Noah was diagnosed with DIPG, which he battled for over 3 years.
First, we are so very thankful to God for blessing us with our Noah and allowing us to spend 7 ½ years with him. We fully submit ourselves to God’s will and we know that this was all a part of His plan. We are grateful to our Father in Heaven for choosing us to be the proud parents of this beautiful and incredible boy. His spirit, strength, courage, faith and complete trust in God have been a life lesson to us. Although we do not know why this happened, we are certain that God truly loves Noah as he was always there to guide Noah to be brave, prayerful and strong in his faith.
We have no regrets in any decisions we’ve made. We prayed for guidance to the find the right doctor, and God led us to Dr. Burzynski. Although this was not the expected outcome, Noah did not suffer. As a result of administering the non-toxic medicine, and not pursuing conventional treatment (radiation/chemo), Noah had quality of life. He was regularly able to attend Children’s Worship Service, 2nd grade homeschool, and extra-curricular activities. Noah left us as handsome as he was the day he was born. Despite the difficulties experienced, Noah always laughed, joked and made people smile. He never complained about being sick. For all of this, we express our heartfelt thanks to the Burzynski Clinic.
Noah prayed to become an Iglesia ni Cristo/Church of Christ Minister when he grew up. People that knew him believed that Noah was already an inspiration to them by his example. Some would also comment, “those who came to know Noah, came to know God”. This is what we believe was Noah’s primary purpose in life.
We extend our sincerest gratitude to all of you who love Noah, and have supported him throughout his entire journey. You are all angels sent from above and you will never be forgotten. May God shower his blessings to you and your loved ones.
Anthony and Michelle Stout
Lima Family Milpitas/Fremont Mortuary
48800 Warm Springs Blvd.
Fremont, CA 94539
Monday, April 7, 2014: 10:00AM – 9:00PM
Tuesday, April 8, 2014: 10:00AM – 9:00PM
Service & Interment:
Wednesday, April 9, 2014 at 1:00PM
Noah’s favorite color was orange. In honor of Noah, please incorporate the color orange in your attire.
Noah enjoyed Thanksgiving as it is his favorite dinner. He celebrated our Church’s end of the year Thanksgiving and attended Children’s Worship Service dressed in a nice tan suit with an orange tie. For those of you who know Noah, he loves to dress his best in suits and ties. He also brought in the New Year singing karaoke with his birthday buddy, Papa Art and family who visited from Arizona.
Noah had a catheter replacement in mid-January. As per the standard surgery procedures, he was given general anesthesia with a breathing tube through the mouth into the airway. Unfortunately, as Noah was still recovering from the common cold, the secretions in his throat worsened due to the breathing tube used in surgery. Noah couldn’t cough up the secretions so he was admitted to the hospital as he needed Respiratory Care for suction. While at the hospital Noah was also experiencing a sporadic itch sensation he gets from time to time. When we took him to the hospital previously, it wasn’t something the doctors had seen before since there was no evidence of a skin rash or irritation. We assumed it was an allergic reaction to something but, antihistamines were ineffective. After doing further research, what Noah was experiencing seemed close to being a type of neuropathic itch. We met with Neurology during the hospital stay and they agreed that may be the case. Thank God, they prescribed a medication that Noah could take on an as needed basis for immediate relief. We watched the Super Bowl from the hospital (Noah enjoyed Bruno Mars’ half time show), and we were discharged the following day. Special thanks to my super supportive Buensuceso and Moreno Family for taking care of our girls, Giana and Leila, while we were away, and to Bro. Rommel San Gabriel, who took the time out of his busy ministerial schedule to come every day to UCSF to pray for Noah and anoint him with oil.
Noah was excited about a recent "Noah Night". It was Menlo High School’s (in Atherton, CA), basketball game, against rival school Sacred Heart Prep. They dedicated this special game to Noah. It was a heartwarming event as the gym was an ocean of orange (Noah’s favorite color). Everyone wore orange, waved orange cloths in the air, had orange balloons and the basketball players from both schools wore orange socks. There were even some students who painted their hair orange! Unfortunately, because Noah was discharged from the hospital that same week, he wasn't able to make it but, he was able to Face Time with his Dad, Anthony who attended the game. Special thanks to Coach Leday and his new Menlo High School (Atherton, CA) and Sacred Heart Prep families.
We also want to say a special Thank You to: Jen Santos, Vanessa Yang, Rosel Allones, Art & Maria Buensuceso, Art & Sally Villasol, Tony Frascone (Principal at John Sinnott Elementary), Hilary Leday (Noah’s 2nd Grade Teacher), Jenny Mutti (Noah’s Homeschool Teacher), Kellie Arnone (CCS PT), Paul Gallarate (CCS OT), Linda O’Connor (Home PT), Craig DeVincent (UCSF), Scott Martin (UCSF), Shannon Raber (UCSF), Amy Selverston (UCSF), Dr. Marquis (Burzynski Clinic), Dr. Burzysnki, Dr. Banerjee (UCSF), Dr. Oates (UCSF), Dr. Lee (UCSF), and many-many others!
Noah's turned 7 years old on September 19, 2013 and celebrated his very special day 1950s biker/surfer style (Teen Beach Movie theme), with his closest friends and family. He also had a birthday party in his classroom at school with new 2nd grade friends and received several greetings and special surprises from many other students at his school. His last MRI was on September 16th and the results were once again stable with no growth, no enhancement and no activity. What a great birthday present!
Noah has been very busy as he started the 2nd Grade at John Sinnott Elementary and was placed in Ms. Leday's class. He continues to be homeschooled by Ms. Mutti. His principal, Mr. Frascone along with the Superintendent, Mr. Matsuoka, graciously offered to let Noah use a robot that allows Noah to be a perceptual student. He was so excited as he remembers seeing this in a movie. The head of the robot is an iPad and Noah controls the robot from another iPad at home. He can move the robot anywhere he wants to and the robot's iPad head, becomes Noah's face through the iPad cameras so that everyone can see Noah and Noah can see everyone, too. Pretty amazing! Noah also made the cover story "Special Student" of our city newspaper. We want to say a special thank you to everyone who has donated and supported our precious, Noah. Noah's school started multiple fundraisers, initiated the city newspaper interview and even reached out to the San Francisco 49ers who gave Noah a package of gifts and an official San Francisco 49er letter letting Noah know they are his new friends and support him completely. The school also held a silent auction for one of 1,000 special commemorative 2012 NFC Championship edition footballs provided by the San Francisco 49ers Foundation signed by pro offensive lineman Mike Iupati enclosed in a glass case, and gave Noah the Iupati autographed jersey. We can't thank you enough for the tremendous support and love you all have given to Noah and our family. This all came to us by surprise and we are very grateful. We thank God once again, for showering our family with all of these bountiful unexpected blessings that not only include the things Noah has received thus far, but also the people we believe God has used as His instruments! God bless you all!
In the early morning of August 8th we rushed Noah to emergency at UCSF. He was admitted to the pediatric intensive care unit (PICU), and diagnosed with Metabolic Acidosis (MA). The doctors were able to correct the MA and Noah was discharged the next day. The following Monday (August 12th), Noah suffered the same emergency and was admitted back into the PICU. He suffered for 30+ hours of itching, no sleep and fast breathing until the doctors were able to correct his MA again, by giving him bicarb. This time, Noah stayed in the hospital for 4 days and was sent home with bicarb pills. The pills are helping Noah and he is doing very well. While in the hospital, Noah had an MRI which showed stable results - no activity and no enhancement once again. Thank God! Root cause of the MA is still unknown.
Thank you for your prayers during this very scary time and new challenge we were faced with. Special thanks to Bro. Rey Membrere for coming to the hospital to pray and anoint Noah with oil every day. God is so GOOD! Thank you to UCSF medical staff for taking good care of our, Noah! Thank you to Dr. Marquis at the Burzynski Clinic for collaborating with UCSF, providing guidance and staying in close contact with us 24/7.
Noah officially started the 2nd grade and is so happy to be homeschooled by Ms. Mutti, again and to be part of Ms. Leday’s 2nd grade class. Noah is excited as he will be taking school pictures on Thursday and will line up with the rest of his class!
Noah's last MRI on June 13, 2013 was stable with no activity and no enhancements, once again. We are always very thankful to God for answering our prayers. Noah's next MRI is scheduled this Friday, August 9th and prayerfully, we'll see good results again - of course we're always praying for tumor breakdown but we'll take stable.
Noah has had home Physical Therapy (PT) with Linda but she, along with Noah's doctors, feel he is ready for that next level of PT. In perfect timing, we were contacted by CCS (California Children's Services), who has offered additional Physical Therapy (PT) and Occupational Therapy (OT) services. Noah is now going to these additional therapy sessions twice a week to get him back to the routine of doing things independently. His 2nd shunt revision back in December 2011 took a toll on him because as his ventricles filled up with fluid - it added pressure to his brain causing some issues with his right side of his body (when he was unconscious his leg was stiff as a board - then when they would tap his shunt to remove the fluid, it would become normal and flexible again). We also believe his long term use of steroids (2+ yrs), caused his body to become more dependent on the steroids versus using his own muscle strength; so tapering him off completely in January 2013 required Noah to work harder in using his own natural strength. In either case - we are very happy because additional PT and OT will get him back to functioning normally. He's pretty excited about exercising in a harness. He remembers going to the Justin Bieber concert and seeing Justin flying across the stage. :-)
Noah has lost 26 lbs (whoohoo!), and will start 2nd grade soon. He's a little bummed about summer vacation ending soon but he'll have a pretty busy schedule with homeschool and PT/OT. He's enjoying every minute of the summer and happy that in no time soon - all of his hard work will pay off and he'll be walking and running around like he used to. Noah continues to lead his 8:00 PM PST devotional prayers asking God for complete healing so he can help other kids who are suffering from this illness and be a deacon in Children's Worship Service (CWS) :-). He continues to inspire me and my entire family with his faith, devotion and trust in what our Father in Heaven can do. Noah is truly heaven sent.
I apologize as it’s been a long time since I've updated this website. We've made more updates to Noah's public Facebook page (I Heart Noah), due to easy access on our smartphones.
Noah's last MRI was in April 2013 and everything was the same. There has been no change since October 2011 (tumor is stable and shunt is working perfectly). Noah has another MRI scheduled June 13, 2013.
Yesterday, Noah sat in the baby pool with his 3 year old and 1 year old sisters playing and having a great time cooling off from the heat. He woke up today feeling good and ready to attend Children's Worship Service, which he attends every Saturday.
As I reflect back to December 27, 2010, I remember that we prayed immediately asking for help and guidance and God led us to Dr. Burzynski. Today, Noah has no symptoms, he's no longer taking steroids and has completed the first grade with Outstanding and Satisfactory grades - reading at the 2nd grade level, already. All of Noah’s doctors say Noah is very unique and doing great – they are almost speechless about how good he’s doing.
We praise God and give Him all the glory because he continues to be Noah’s protector and shield from this illness. We thank God for the Church of Christ (Iglesia ni Cristo), the great support we have from all of you, Dr. Burzysnki and his non-toxic medicine, for keeping His promises about anointing of oil (James 5:14 - Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord), answering our every prayer and Noah’s great progress. Although we pray several times throughout our day, we continue to dedicate 8:00pm every day to specifically ask God to heal Noah. We’ve also not missed a day of anointing of oil since diagnosis. If there is a cure to this awful illness – I can only say it’s having faith, trust and zero doubts in God’s mercy and miracles. God is truly magnificent, the most powerful and the greatest above all.
You can watch our family interview taken early 2012: http://incmedia.org/wpmedia/videos/the-power-of-prayer Noah actually looks completely different as he’s lost a ton of weight soon as he stopped taking steroids. You can see up to date pictures on his Facebook page: https://www.facebook.com/pages/I-Heart-Noah/155929211124392.
Thank you again for your support and may God shower His abundant blessings to all of you!
On February 12, 2013 Noah had his routine MRI and the results were stable and not active, once again. There has been no change since October 2011. Thank God! That very same day was the last day Noah took his steroids. He is completely off of hydrocortisone (steroids) and is doing extremely well. He now only takes natural supplements (potassium and iron) and his ANP medicine.
Noah has also doing great with his homeschool studies. He's been getting 100% on his spelling tests, most times, and he's doing well in learning how to count money and how to tell time. He's also improving with his right side strength and using his left hand a lot more these days.
We apologize for the delay in updating this website. Noah also has a public Facebook page "I Heart Noah" and because of easy access - we sometimes post more updates on his FB page than this website.
Noah had an ACTH test last Friday which is a test to determine if his body is producing its natural steroids. The results of the test would tell us if he's ready to stop taking his hydrocortisone pills. The test showed that his adrenals are still partially suppressed. The doctors typically want to see a rise of greater than 10 but his rose to 8. They advised us not to be discouraged as his adrenals are waking up! He just needs a little more time so they advised us to stop his last dose and re-test in January. He's now taking 7.5mg (instead of 10mg), of hydrocortisone and what is reassuring is that there is no harm with this low dose since this is basically comparable to a person's natural steroid level.
Although Noah was a bit disappointed in the results (he was so excited to stop taking these pills!), he continues to do very well. He's still the same happy-go-lucky and extremely blessed little 6 year old boy who never ceases to amaze us! His next MRI will be in December. Stay tuned.
Noah had his MRI on Tuesday, October 2nd and his tumor continues to remain stable and his ventricles continue to remain small (which means his shunt is working perfectly). Thank God!
Noah has been having so much fun playing with all of his new toys and art supplies he received from his birthday. He's also been having fun in the sun with his sister, Giana in the baby pool we set up in our backyard.
We have been so blessed that Noah's tumor has not progressed for a year (since Oct 2011), and he is not experiencing any pains, discomforts, symptoms or side effects. We continue to wait patiently and pray for tumor breakdown, which we know will happen in God's perfect timing.
Noah had a terrific week! He's a 6 year old now and celebrated his birthday with two parties. His first celebration was midnight on his actual birthday (September 19). His Dad baked him a confetti cake per his request, and his Aunty Josie, his sisters Giana and Leila, his Dad and I sang "Happy Birthday!" where he was able to open his first gift and make his first wish as he blew out his candles. He wasn't feeling too good this day but we were very blessed because he perked up within hours of his actual birthday. His second birthday celebration (Superhero/Graffiti party), was at his Uncle Jun and Aunty Grace's house last Sunday. The backyard was raining balloons and we also had a 7ft Hulk made out of balloons since Hulk is his favorite. His Aunty Jill, provided an art activities for kids to color graffiti letters to make a name plate, and a wall of canvas for kids to paint with water-based non-toxic paint. A friendly clown came to face paint and Spiderman made a special appearance to host games and other fun activities. Noah was SO happy and in his 8:00pm devotional prayer, he thanked God for blessing him with a great birthday party and for the strength he had that day, as he felt great all day long. Thank you to all our very special family and friends who helped us with the party, for those who celebrated this very special milestone and for all of you who sent gifts and birthday greetings. Noah felt all of God's love that day!
Noah had a few follow up appointments this past month and all of his doctors see improvement, physically. I say physically because there's been zero issues with him mentally - he's still the same Noah, just smarter because he's maturing, learning every day through this experience and from being homeschool. He has been down to the very minimum dose of his steroids for a few weeks now (which is equivilent to the normal amount of cortisol the body produces), and will be tested in 6-8 weeks to determine if he can stop steroids, completely. He's also lost ~6 pounds. :)
We will be celebrating Noah's 6th birthday (September 19th), this month and he's very excited. This is truly another major milestone in his life and testimony of God's blessings. We were told that within months of his diagnosis we would see a rapid decline in his health physically/mentally and, we wouldn't see his 5th birthday. We are so grateful.
Noah had an MRI on August 3rd and once again, results showed no tumor progression and no hydrocephalus. We had a scary moment a few weeks before his MRI. At 2:00 AM July 27th, Noah had a 105 degree fever so we rushed him to the ER. We also called our Minister Bro. Matthew Capistrano who immediately came to the hospital that early morning to pray and anoint Noah with oil. By 1:00pm the same day, his fever was completely gone and never came back. To make sure Noah was completely OK he was admitted to UCSF to continue the antibiotic that was being administered through his catheter. Doctors at UCSF couldn’t source his fever so we were discharged on July 30th and home with Noah’s sister’s Giana and Leila who we missed so very much. During our stay at UCSF we also met with Endocrinologists who gave us a tapering schedule to wean Noah off of his steroids. They also took him off of Decadron and changed his steroid to Hydrocortisone because it is easier to taper. I learned that 1mg of Decadron was equivalent to 50mg of Hydrocortisone which is no wonder why it affected Noah so drastically. We noticed that after Noah’s fever episode, he gained right side strength as he’s standing up on his own, and back to using his right hand to play with his Nintendo DS and laptop. The temperature of his right leg and right hand are the same as the rest of his body (they used to be cold), which tells us his blood is circulating better. His physical therapist was very happy to see these changes and says Noah is really improving. We are so thankful to God for the over-all good results and thankful for your continuous prayers.
Noah had his MRI on June 8th and results showed no tumor progression and no hydrocephalus. These results also showed that his tumor was no longer swelling so the doctors are comfortable discontinuing the steroids. We are now weaning him off and he's doing well. Thank you all for your prayers... Noah is very blessed.
Noah still continues to do well every day and May 27 will mark 17 months since diagnosis. He was so happy and brought his teacher, Jill, to our Church's Teacher Appreciation night last Friday and really enjoyed himself. He also had a great time watching the movie, Avengers and went to see it the day the movie came out. Noah shows us how well he reads and spells when he uses his IPod Touch to text his cousins to come over. He's also a very proud big brother again to his baby sister, Leila who was born on April 18. Noah loves to play with her and is also a great babysitter. His tumor has been stable since last October (praise God), with no growth, and his blood work shows stable electrolyte levels which allows him to consistently take his ANP treatment. His Dad and I found tricks on how to draw his blood when his catheter gets clogged so we haven't had the need to take him to the hospital. Thankfully, he only goes to the hospital for routine MRI checks. Noah's next MRI is scheduled June 8. We continue to pray every day for tumor break down.
Noah's last MRI was on April 6, 2012 and the doctors confirmed there was no tumor growth again! :-) Noah is also using a walking boot now, which was specially made to help his right foot from turning in when he stands up. He's able to get around easier with help, he's happier, more energetic and, very happy to have a new baby sister we named Leila, who was born on April 18. Devotional prayers and annointing of oil continues every day without a miss and I am always so grateful to be able to share this good news. We give all the glory and honor to our Almighty Father. Thank you God!
Today marks 15 months since Noah was first diagnosed. He is doing very well and continues to take his ANP treatment. He enjoys his normal day-to-day activities which includes homeschool, physical therapy (once a week), playing, singing & dancing, Wii and painting. He hasn't been back to the hospital for any major issues since his shunt was revised last December, thanks to our Almighty God. That hydrocephalus is something else! We're very happy and relieved the shunt is working properly and no more scary moments like we had end of last year being in and out of the hospital. We have experienced so many miracles and are very blessed to be the parents of this very brave little miracle boy. Noah continues to amaze and be an inspiration to all of us every day. His next MRI is scheduled Friday, April 6. We continue to pray for good results!
Our family has had a blessed 2012 and we have so much to be thankful for. Noah's last MRI from February 7 showed no tumor growth again. His tumor has not grown since October 2011. Praise God! We also received great news that Noah's MRI images showed no more hydrocephalus - the shunt is working perfectly. God willing it will continue to work as it should, and Noah won't have to have any more surgeries. We were also able to reduce his steroids to 1x a day since his tumor is not swelling and so far, we've had no issues.
Noah is now undergoing physical therapy (PT) to help strengthen his right side which got a little weak after his hydrocephalus issues. We had a hard time finding a PT that would come to our house but thanks to Cici our family friend, she was able to find one who can come over weekly to work with Noah.
I've also posted a new button on the More Info tab called, INC coverage on Noah - Power of Prayer. Our Church did a story on Noah and our family - feel free to watch when you have a moment. Thanks again for all the support, love and prayers. We appreciate you all very much. Take care and God bless!