Updates and Comments
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!
Happy New Year!!!
On December 8th while at Noah’s MRI appointment, we noticed he was very lethargic and flushed so we took him to the UCSF clinic once the MRI was completed. The doctors at the clinic checked Noah’s vitals which were good, but because Noah was becoming sleepier they immediately admitted him into the hospital which is located across the street. The UCSF Neurosurgeons tapped his shunt (which is the process to remove fluid from a shunt reservoir), and they found that his shunt wasn’t working properly. Noah was in the operating room within 3 hours of being admitted to the hospital. The Neurosurgeons determined the valve wasn’t functioning so they replaced it and Noah was released the following day.
On December 26th, we noticed Noah was becoming lethargic again, and this time he complained of a headache and wasn’t feeling very well. We rushed him back to UCSF Hospital where he was admitted yet again. Noah had surgery the very next morning where the Neurosurgeons replaced his valve once more and lowered the pressure level. For a steady monitored recovery Noah was required to stay in the hospital for three days this time and was finally released on December 29th... Just in time for Noah to spend New Year’s Eve with his family at home.
The MRI on December 8th showed no tumor growth! Praise God! The next MRI is scheduled for February.
Each MRI, each surgery, each and every episode dealt, Noah has exceeded with positive outcomes. Among all of that has been preceded, December 27th is the utmost momentous to date. Noah has surpassed the given time frame since his initial diagnosis of DIPG.
We are amazed by the continuous support, through the unpronounced simple acts of kindness, donations and devout prayers. Alongside our faith, every thought and word spoken, gifted with encouragement has framed an everlasting impression towards our family and with that we are sincerely grateful.
Noah's last MRI was on October 13th and showed a 10% increase. Looking at the glass half full, the growth isn't too bad considering his previous MRI showed no growth at all. We suspect that because he was hospitalized in August and on and off his treatment, this is when there was tumor growth because the previous month – he was on his treatment consistently at full dose every day and there was no growth.
On October 24th, Noah had an outpatient surgery for a broviac catheter replacement. We were having problems drawing his blood work which is required by FDA to monitor Noah's electrolyte levels amongst other things, while on the ANP treatment. The catheter had no problems infusing his treatment but for some reason was consistently occluded when we tried to draw. After several trips to the ER waiting 4-6 hours each trip, we decided to replace his catheter. He did well with the surgery and came home that night.
The following day (Oct 25th), was a scary day for us. We watched Noah like a hawk, per the doctor's instructions and that day, Noah complained of a headache and was extremely tired. We knew the hydrocephalus came back and it was time to call 911. Sure enough, as the time went by at the hospital Noah became sleepier and soon nonresponsive. The doctors at UCSF were waiting for us to arrive and soon as we got there, placed an external shunt. Within a few hours after the external shunt was placed, Noah woke up - thank God.
The next day (Oct 26th), we were fortunate someone cancelled their surgery so Noah was able to take their place in the operating room for an internal shunt surgery. There was one minor complication during his surgery but he did well for the most part and was released within two days after his surgery.
As of today, Noah’s doing well. Very happy to be out of the hospital and home to play with his cousins and baby sister.
I also wanted to let you know that Ozomatli has put together an online performance benefit show for our, Noah. Please mark your calendars for November 21, 2011. Tickets are $3.00 with the option to tip the performers online, and all proceeds go to Noah so we need your support. Please spread the word and the love for our Noah. For more information, please go to the More Info tab and click on Ozomatli Benefit for Noah 11/21/11.
Sorry for the delay with the updates... it's been an extremly busy couple months for us.
On July 19, 2011 Noah's MRI showed a 5% increase in tumor growth. He finally reached full dose of his ANP treatment at the end of July and was doing very well at this dose.
Unfortunately, he was admitted to UCSF Children's Hospital on August 17th. He was rushed in an ambulance to the local hospital so doctor's could make sure he was stable enough to be transported to UCSF which is an hour away from where we live. An ambulance from UCSF Children's Hospital came to pick up Noah early morning on August 17th from the local hospital with a pediatric doctor and nurse on board. He was diagnosed with very low sodium and because doctors saw minor hydrocephalus in his CT scan, they placed an external shunt in his head. Thank God, Noah woke up at 6:30PM that Thursday, and his sodium levels were back to normal by 10:30PM.
The external shunt revealed no pressure and very little fluid in Noah's head. Because of that, the Neurosurgeon advised an internal shunt was not needed at this time. They also gave very little sodium that day and basically informed us that Noah's body healed itself.
Noah also had an MRI done on Sunday, August 20 which thankfully revealed no tumor growth. It also revealed two little spots below the tumor which at first were thought of as blood clots or dead tissue cells. His Cardio Echo Gram proved they weren't blood clots since Noah's heart is perfect. Doctor's at UCSF cannot explain the two little spots but confirmed they are not in any dangerous areas so not a concern. Dr. B's office stated there is a high possibility of it being tumor debris. Since we were first told they could be dead tissue and since Dr. B's office says there's a high possibility of it being tumor debris, we speculate that the tumor is breaking down which tipped off Noah's chemical imbalancing.
Noah was discharged after a week and is very happy to be home. Thank you to the Bro. Rey Membrere and the deacons who came to annoint Noah with oil at the hospital, daily. Thank you to UCSF medical staff for taking such great care of Noah. Thank you to Dr. Burzynski's medical staff for being available to guide us 24/7. Thank you to all the friends and family who visited Noah daily, making his time at the hospital fun and fly right by.
What happened to Noah was unexplainable to the doctors. How his body healed itself was also unexplainable. The unexplainable healing and results of his last MRI are called miracles. Thank you God!
Since the last update, Noah has been getting better and better each and every day. In my last update, we were faced with electrolyte issues but Noah has overcome all of the those issues and is doing great. His electrolyte levels are within normal range and he will be back to the normal dose of his treatment within the next week or two. Noah had his monthly physical today and he passed all of the neurological tests with no problem. Noah is still physically and mentally strong - walking, talking, learning, laughing, playing - you name it. He has actually had a lot of weight gain as a result of the steroids but other than that – he looks perfectly fine and acts perfectly normal. Noah is supposed to start Kindergarten this September but since he’s on treatment, we decided to home school him. Thanks to his Aunty Jill, he has all his school supplies and has now started learning math, reading, spelling and writing. I know it seems like more than what a normal Kindergartner would learn but Noah's there and you teach him one time - and he's got it down. He even gets annoyed if you try to teach him again to make sure he understands... he says, "I know how to do this, Mom!" :-) Noah also attends Children’s Worship Service (CWS) every Sunday and is very attentive during the service. He also leads the children’s committee prayers sometimes and has been awarded CWS Model Child. His next MRI is scheduled for 3rd week of July. Thanks to all for your continued support and thanks to our Almighty God for protecting Noah and answering all of our prayers.
Noah had an MRI on May 26, 2011 and the results showed a 10% increase in tumor growth. The MRI results also showed minor subdural bleeding that is not located on his brain tissue or near the tumor which will hopefully heal itself. He has also had some problems with high sodium levels as a result of not drinking as much water as he used to. He started to get tired of drinking water so we are consistently giving him more water, diluting his drinks with water and changed his diet to resolve this problem. We think the high sodium level caused the subdural bleeding. He's also had unexplainable high uric acid levels that are causing him to become very sleepy and is currently taking medication to help reduce these levels. On the outside - thank God, Noah shows no symptoms. He is still our intelligent, articulate and playful Noah. We continue to pray our son will be healed from this illness. We know and have been told by his doctors - sometimes it gets worse before it gets better so hopefully this is the worse. :-)
Noah continues to remain stable based on the ANP treatments he continues to receive. He has had sporadic low grade fevers for the past month and a half. His lab results show no infections but they did show high uric acid levels. High uric acid levels could also mean kidney stones but Noah shows no symptoms that could prove that is the reason for the high levels. Per his doctor, these are all signs of tumor breakdown. During his last monthly physical, his local doctor confirmed Noah was doing better and making great progress and we notice he is happier these days... laughing, dancing and singing again. We will schedule his next MRI sometime around May 24th and we hope to see good results again. Thank you for your continued support and prayers! God bless you all!
Noah had an MRI done last Tuesday, March 29th, 2011 at UCSF. That date marked 4 weeks exactly, after receiving his ANP treatment. The results were sent to Houston and the Radiologist at the Burzynski Clinic evaluated his MRI today. He concluded that the tumor's length and depth were the same. There was however a 2mm increase in the width. He basically considers Noah's tumor stable which is good news! He also said there was no need to do another PET scan right now. His last PET scan was done on February 9, 2011 in Houston and the results showed negative meaning the tumor was not active which was surprising for a Grade 3 AA.
Thanks to our Almighty God who is listening to our prayers and helping our beautiful Noah!
Noah is very happy to be home and is almost at the full dose of his medications. His lab results and his recent monthly physical still confirms that everything is normal. Noah is back to singing again and told me he can't wait until he's fully recovered so he can break dance again! Noah says, "Thank you everyone for all your help and love for me!"
Noah is doing very well from the medical treatment he is receiving. He is physically and mentally strong and extremely brave! He is still playing, joking and laughing again. His lab results confirm everything is normal and he is tolerating the medications, perfectly. Praise God!