Pylocitic Astrocytoma were words that Tatia and I never had in our vocabulary; that is, until May of 2007, when Braiden was diagnosed with this type of tumor at Children's Hospital Boston. The events leading up to this day were very interesting to say the least, but if it were not for Tatia's intuitive motherly instincts, life for Braiden, Tatia, and I could have been very different
For several months Braiden had been having eye problems and balance issues. These issues were not major, and did not become a big concern of ours until Braiden had what we thought was a seizure in December of 2006. In the months following this “seizure”, several local doctors repeatedly diagnosed Braiden with having an eye disorder called Strabismus and wanted to have him fitted for glasses. We researched Strabismus ourselves, and it just didn't connect with us that this was the source of Braiden’s eye and balance issues.
On May 24, 2007 Tatia frantically called Dr. Hunter, who through our research, we found to be an eye specialist in pediatrics and the chief Ophthalmologist at Children’s Hospital Boston. Tatia told Dr. Hunter that Braiden's balance had been quickly degrading, and she felt that there was much more to Braiden’s eye and balance problems than needing prescription glasses. Dr. Hunter scheduled an immediate appointment for Braiden to be seen up in Boston.
Shortly into this eye exam, the appointment came to an abrupt halt and we were directed to the emergency room for a CT scan. Dr. Hunter had observed that Braiden’s optic nerves were being pressed into the back of his eyes. Dr. Hunter stated that this was an indication of Hydrocephalus, which is a buildup of fluid in the skull that causes pressure behind the eyes. Shortly after the CT scan, a group of doctors entered our room and greeted us with handshakes. We knew that what we were about to hear would not be good, especially since I had spoken with these same doctors shortly before, and no handshakes were exchanged then. We were told that Braiden had a 4cm mass on his brain stem. Not only did they tell us that this was one of the worst spots for a tumor to appear, but they then said that he had only a fifty percent chance of survival. This was, of course, any parent’s worst nightmare, and emotions previously unknown to us consumed Tatia and myself.
The following day we were introduced to Dr. Lillian Goumnerova, a highly respected neurosurgeon. She would ultimately be the one who would perform surgery to relieve the pressure being caused by the tumor as well as doing a biopsy to determine the type of tumor Braiden had. After this initial 4-hour surgery, our spirits were partially lifted, because the pressure had been relieved behind Braiden's eyes, and they looked so normal compared to the past few months. The doctors explained to us that Braiden had most likely been living with constant headaches due to the extreme pressure which was a direct result from the tumor placement. It all came into focus as to why Braiden had always been so reserved and seemed so quiet. Imagine living every day with a migraine and you can only begin to see how awful poor Braiden must have constantly felt.
It was 5 days after this pressure relieving surgery that Braiden was scheduled for tumor resection surgery. This surgery involved removing most of the tumor – the part that was accessible and which removal would not threaten vital body functions. The surgery took nearly 13 hours; it felt a lot more like 13 days to us. A surgery of this magnitude is extremely risky and delicate, especially on such a young child. All we could do was pray that Braiden would pull through and that nothing in Braiden’s brain or other systems would be damaged during the procedure. Tatia and I, along with her parents who had flown up from Florida for the surgery, had made a vow to each other, but mostly to ourselves and to God, that since Braiden could not eat or drink during this surgery, that we would fast as well. It was a small sacrifice, but it was nothing compared to what our little boy went through. Braiden came out of this lengthy surgery with no complications, thanks to God and the gentle touch of Dr. Goumnerova and her caring staff.
We had to wait nearly a full week to receive the results from the Pathology department as to what type of tumor Braiden had and whether it was benign or malignant. The results were in our favor. Braiden was diagnosed with a low grade, benign, Pylocyic Astrocytoma, which is a common brain tumor in children. We were told this was a slow growing and mostly harmless tumor, which set our minds at ease, at least at that time.
Over the course of the next few months Tatia and I kept a tireless yet mandatory, and constant eye on Braiden’s every move. The three of us made several trips back up to Children’s Hospital Boston for various reasons ranging from a fall to a common fever. We became quite familiar with these trips and the hospital itself, and literally, just so happened to spend every holiday weekend stuck in a 10x10 hospital room. A small price to pay for the health of our son.
It was August when we were rocked to our cores again. Tatia and I attempted to take Braiden for a bike ride in his baby seat, which had been mounted to the back of my bicycle. While trying to put his helmet on, we realized it wasn’t even close to fitting on his head. This was shocking to us because merely four weeks earlier we had put the helmet on him and it fit fine. We instantly knew that the problem was Hydrocephalus, which meant the fluid and therefore pressure was back inside Braiden’s head. Our fears were confirmed the following day when we went back to Children’s Hospital and had his head measured. It was 2 cm larger than it was just 4 weeks prior.
This unforeseen setback put Braiden back in CHB where they performed yet another CT scan to get a closer look at his ventricles. On August 30, 2007, we were admitted once again to the ninth floor of Children’s Hospital. By now it felt like our second home, which is not a good feeling to have. We spent every waking moment feeling totally numb, just thinking of and praying for Braiden. Our nights were sleepless for the most part, the little sleep we got being curled up in a fold- out hospital chair.
The following morning Children’s Hospital surgeons installed an external shunt to relieve the pressure inside Braiden’s head. The doctors were hopeful that after the pressure was relieved that his brain would be able to maintain the decreased pressure by itself. This external shunt was the last alternative to Braiden needing an internal and permanent shunt. For Braiden this was a necessary but torturous operation, as he had to lie flat on his back for a continuous 24-hour period because the drain used gravity to relieve the pressure. Attempting to keep a two year old still, never mind flat on his back is not the easiest thing to do, but Braiden pulled though with little difficulty. Remember that Braiden had been through so much in 2007 that he has learned to adapt to hospital procedures quite well, probably more so than an adult. In Braiden’s first two years he has had 5 surgeries, and he was becoming quite used to them. Our little guy is a lot tougher than we, because each surgery drained us and aged us more than we would like to admit.
With the way things had been going we were not surprised that Braiden’s brain wasn't able to maintain the new lowered pressure. This was what we had feared might happen, and Braiden’s neurology team determined that the dreaded internal life- long shunt would have to be installed. We had anticipated this, and had done an enormous amount of research prior to heading back up to CHB. An internal shunt is a device that is surgically inserted into the brain and attaches to a long tube that runs through the body and into the stomach where the built up fluid from the brain is deposited. Our research made us very concerned about this shunt because it has been well documented that these shunts are fairly high maintenance and have a high rate of failure. As usual Braiden took the surgery quite well, and he recovered faster than the team of doctors had expected.
A few days after the shunt surgery Braiden was walking around the Neurology ward pushing his new favorite toy, a toy Dirt Devil vacuum. He became so attached to this toy that he had to sleep with it each night. Tatia and I became very familiar with the little motor churning away as we watched Red Sox games on the small hospital television. Needless to say, when we were discharged later that week, the wonderful nurses at Children’s didn't think twice about giving the vacuum to Braiden and letting him take it home.
For the following three months life became much more stable and nearly normal which we didn’t think could be possible. We finally came to terms that the shunt would be a permanent part of all of our lives. Braiden was eating, sleeping and playing very well. We even felt comfortable enough to take a couple of weekend trips to our favorite cabin in the White Mountains, New Hampshire. During this calm period before another storm Tatia and I only had a few concerns as to whether Braiden’s shunt was having complications, which we were able to quickly dispel following frantic trips back up to Children’s Hospital Boston.
Shocking news and more hard times fell on us again when we took Braiden for his quarterly MRI on Monday, December 3rd. These MRIs are scheduled to monitor the remaining tumor for changes, and unfortunately Braiden’s tumor had changed. The scan showed a .5cm growth. This was beyond devastating to Tatia and I, and once again we were at an utter loss. Feelings we never knew were possible filled us both again as we thought of Braiden and why this was happening to such a kind and special little boy. We have never felt so helpless. Braiden had no idea what was taking place inside of him. Even more frustrating is the fact that Braiden is too young to tell us exactly how he is feeling.
The news of the tumor growth crushed us, and was made even worse because the doctors could not even provide us with a prognosis. It would have to be something that the specialists at Children’s Hospital would have to discuss in a conference with the Oncologists at Dana Farber. The two teams of specialists met the following Thursday and ultimately determined that the next step, and only alternative for Braiden, would have to be Chemotherapy. This was due to the fact that the location of the remainder of the tumor was located on the brain stem and surgery was too risky.
The specialists outlined a chemotherapy plan that scheduled Braiden to receive intravenous injections once a week for an entire year beginning in January, 2008. A new low hit Tatia and I. At every step of the way we thought things could not get any worse, and each event proved us wrong time and again. The emotional roller coaster Tatia and I have been riding this year is indescribable. Picture the highest and lowest parts of your life, then multiply them by ten and group them together in a 6-month span and you can only begin to understand what we have been through.
This diagnosis prompted more hours of research as to what Braiden would soon be put through. It didn't look promising. Our appointment with our Oncologist, Dr. Chi at Dana Farber's Jimmy Fund, confirmed that chemotherapy is by no means a fix, but merely a hopeful halt to further tumor growth. Indeed even if the chemotherapy was successful in stopping the growth it would cause massive havoc on his entire body and more than likely only be effective for only a couple of years. If it were to grow back again he would require more chemotherapy until he reaches an age of around 10 at which time the doctors would feel comfortable performing radiation therapy on him, which is just slightly more promising than chemotherapy.
We soon educated ourselves about the world of alternative cancer treatments through countless hours of online research. We spoke to many Natural-Pathic doctors and received many opinions. Through devine appointment, we obtained the phone number of a family who had gone through an almost identical experience as we had just a few years ago. This family also had rejected the conventional chemotherapy treatment because of its devastating side effects on children. There are too many awful side effects to count, but they can include loss of hair, nausea, hearing loss, kidney and liver damage. Instead, they put their daughter on a supplement called Protocel. Through our research, we found Protocel to be surprisingly effective and decided it was worth more than a cursory look. We were blessed to learn that our Neurology/Oncology team would allow us 8 weeks to try the Protocel before they would push to begin the chemotherapy treatments. This 8-week period is exactly what we were hoping for, because if Protocel works, it is possible to be evident within this time frame.
In addition to the Protocel, Braiden has been on a whole foods, organic, and sugar-free diet for the past few months. We, along with other researchers believe that this can only better his chance for a complete cure.
If you’re interested as to what exactly Protocel is and how it works, as well as a few positive testimonials, please visit the link page on Braiden’s site. By no means are we ensured a cure through Protocel but we feel very positive about it, as it certainly sounds more promising than the chemotherapy treatment and its side effects that Braiden could very easily still receive.
In the past 6 months Tatia and I have seen a whole different spectrum of life that we never imagined or hoped we would encounter. The experiences we have had to endure have made us totally selfless and put every other aspect of our daily life into clear perspective. In 1996 I joined the US Navy, and while in boot camp I was taught an invaluable phrase. I can now relate this phrase to almost every aspect of my life. This phrase is "Adapt and Overcome", and that is exactly what Tatia and I have had to do. We hope and pray that 2008 will bring positive change for the three of us, and all we ask of each of you reading this will be to keep Braiden in your hearts and prayers. Thank you one and all for the support you have given to us and for taking the time to read about little Braiden’s experience thus far. Please continue to check back into this site, as we will update it as necessary. Once again and in closing, we plan to Adapt and Overcome.
Phil and Tatia Norton
Braiden Charles Norton
D.O.B. 7/27/2005
February 28, 2008 Update:
Our quarterly MRI was recently taken on February 27, 2008. The results showed that Braiden's tumor has continued to grow at the same rate as it had previously done between September '07 and December '07. This news was devastating to us as we have put forth much effort into conquering the tumor by introducing specific suppliments and drastically changing his diet.
We have decided to pursue chemotherapy at this time as recommended by the Dana Farber Cancer Institute. Braiden will undergo surgery to have a catheter installed on March 4, 2008 and will begin Chemotherapy (a combination of Vinchristine and Carboplat) shortly thereafter. This chemo regiment will be administered weekly for an entire year and he will continue on his quarterly MRI schedule.
As parents we are shifting gears into complimentary treatment research. Their are many ways to naturally reduce the harmful side effects of Chemotherapy.
To end on a good note, Braiden continues to be the biggest "trooper" through all of this. He is very active, happy and as healthy as one can possibly be while having a brain tumor.
Tatia and I have tried hard to accept chemotherapy treatment for Braiden as strongly recommended to us by numerous medical institutions. However, if you take deep look into exactly what his prescribed chemo agents are you would understand our reason for rejecting treatment. We feel no peace about signing up beautiful happy Braiden up for potentially 5 out of 10 years on rigorous chemo which would be followed by radiation therapy in years to come. Both of which have a very slim chance of doing anything to his tumor.
We researched the Burzinsky Clinic in Houston, TX and strongly felt we had to pursue his FDA phase II clinical trials for Braiden's type of tumor. His Antineoplastin treatment is a genetic targeted treatment. You can learn more about it and how it works on his website by clicking here. You can also view some impressive testimonies on his treatments being used on Astrocytoma and Brain Stem Glioma tumors by clicking here.
We arrived in Houston on March 24, accompanied by Tatia's dad from Ft. Lauderdale to get a first hand look at the facility as well as a consultation with Dr. Berzinski. We are impressed with everything so far. Braiden started Antineoplastin intravenous treatment on March 26 and is doing great. At this early time in treatment, Braiden must carry a back pack which hold a special pump as well as the liquid medication bags. As I write this he is running around laughing and playing with grandpa and could care less about the somewhat heavy backpack he carries.
We will be here for another 2 weeks or so so they can dial in his dosage but most importantly train Tatia and I on how to care for his somewhat complicated (at least at this point) procedures. I am very glad that Tatia has medical training already otherwise we would be extremely overwhelmed. We have a lot to learn.
This treatment is very expensive and is unclear whether insurance will pay. We will need to take fundraising to a higher level in the future.
Please continue to pray for us and thanks for everyone's support.
April, 7, 2008 update:
Today is April 7, 2008, Braiden has been on Antineoplastin treatment for almost 2 weeks now and we wish that his status at this point was the way it was when he started on March 26. Braiden has had very rough times for the past week. He has had a fever and has been very sleepy amongst other things. We are also struggling to get any food into him at all and he won't drink anything but milk, both of which are very unusual. Tatia and I think that this treatment has had a negative impact on his taste buds because he touches everything to his tongue before attempting to place it in his mouth. So we spend every meal preparing him several dishes hoping that something will stick. He is being monitored very closely and blood work every other day keeps coming back normal. Braiden is now on an antibiotic to rule any infection out. This is a very difficult time for all of us but we have no choice to continue on, having to take Braiden off this treatment will destroy us. The clinic has informed us that everyone is different and some kids have harder times than others adapting to treatment.
Regardless, Braiden does come out of his shell once in awhile and shows us that he is still a happy boy and reassures us that he is still charging forward on the battle field to be cured. We also still strongly believe that we are at the right place and doing the best thing for Braiden. We just pray that things will ease up on us all.
For those of you who have not noticed, we have added PayPal to Braiden's fundraiser page and are amidst starting a non profit Braiden Norton Foundation which enables donors to write off donations when it comes tax time next year. Please spread the word, donations are very important to Braiden's fundraiser account as this treatment is very expensive. Also, keep in mind that April 12 is a fundraiser for Braiden in New Bedford. See the flyer posted on his fundraiser page for more info. It's still up in the air as to whether we will be back in time to attend.
Braiden is back on treatment and has been for a couple weeks now. The complications he had before are all gone and he is taking the treatment well. We flew back home on April 16, and have been spending much of our time trying to get settled back in and establish a routine that works for us. We have all of Braiden’s medical supplies very well organized thanks to Tatia and we are in daily contact with the clinic in Houston. Over the past few days we have noticed changes in Braiden’s eyes. He seems to be able to look up now and we can’t see that as being a bad thing. We had an eye exam with Dr, Hunter yesterday and even he saw great progress with his eyes and we all agree something is taking place………..a miracle???? That’s what we pray for. Most people who haven’t seen Braiden in a few weeks say the same thing, that B’s eyes look much better, much more relaxed.
On another note, I haven’t mentioned on this site yet, but my co-workers as well as many others have taken my request to turn Braiden’s bedroom into a magical place by taking down the wall dividing the guest room and his room and transforming it.
Shortly after arriving home from Houston, they had completed the room and we had a debut party with local TV news/newspapers present. Braiden cut the ribbon on the door and we walked into a room like no other, magical would be the best word to describe it. This nautical theme room must be seen to appreciate, even though the pictures will make you jaw drop as well. Check out the photos on his photo page. Needless to say, it’s just what the little bugga needed. He, actually we, all enjoy this room and spend a lot of time in it. Their were many people and donors involved in this project and it took over 400 man hours to complete, all of which was donated time. Thanks to everyone involved.
So at this point we continue treatment and continue on with our lives. We are always looking for a helping hand now, just people to come over and play with Braiden while I’m at work so that Tatia can stay on top of the treatment schedule. Her alarm clock literally goes off every hour or so reminding her that something needs to be done. This is a lot of work! Though the stress levels for finding a treatment that we could agree with has subsided, the stress levels for keeping up on it has taken it’s place. One day at a time…………………………………………
May 13, 2008 update:
Braiden had his first MRI yesterday since he started Antineoplastin treatment at the Burzynski Clinic. It was a VERY big day for us because we have noticed great changes in his eyes, along with many others.in the recent weeks. The results came back and for the first time in months we have had some great news. Braiden's tumor is considered "stable" at this time as compared to the March 24, 2008 MRI. We are currently enjoying the extremely good news, but are strangely somewhat reserved as far as celebrating goes. I think deep down inside we know that we may have a long road ahead of us.
Most importantly, Braiden continues to amaze us on how great and STRONG of a kid he is. He's a trooper and that's for sure............
This update is way past due, but here we are. The most recent MRI taken on July 7, 2008 showed great results. The final report indicated that the tumor has shrunk by 23%. This news greatly exceeded our expectations. So, we've continued to do what we've been doing as well as even adding more to his treatments. We've researched Ruta 6/Calc Phos which is a homeopathic brain tumor treatment used on the other side of the globe for some time and have decided it can only help.
Our next MRI is September 3, 2008. We're making great progress here in every aspect of Braiden's treatment. The only side effect we've been having to deal with is the frequent urination. Because of the salinity in his med's he drinks water like it's going out of style. This is very difficult to deal with every night especially because it's constant work keeping him dry. Tatia and I take turns every other night sleeping with Braiden to deal with this. Whoever's night it is, Tatia or I can count on changing 8-10 sobbing diapers, 4-8 bed mats and the occasional T-shirt. We're pretty much up every 1/2 hour or so. VERY TIRING. We do complain about the lack of sleep and feeling like a zombie every other day, but we also understand that if Braiden was on chemo, we'd be begging to have just this one side effect. Our friend Laura Raibel is a huge help around our household lately and helps with really everything we need. Special thanks to her, and by the way, if I thank her, I guess I have to thanks a zillion people who are constantly helping us across the board, you all know who you are, but Laura Broekel, Bob Szila, Earl Feeney to name a couple off the top of my head
We guess the most recent news, which has really prompted me to finally update this thing is what took place this weekend. As we mentioned, everything has been going great, not really any setbacks to mention. Until Saturday August 16, when while flushing his central line (portacath) we noticed the local area around the port bubbling up under the skin. Obviously, the saline flush was not making its way through the catheter, but seeping out around the port. We shifter into emergency mode around 1:30 PM and were instructed to bring Braiden to the ER immediately. We all assumed the port had malfunctioned and by 4PM the FleuroScan had shown just that. To make a long story short, we were admitted to Children's Hospital Boston and scheduled for surgery to remove the broken portacath and install a new one. This was done this morning at 10AM. This surgery was Braiden's 7th, and keep in mind he just turned 3. He was out of surgery 1.5 hours later and as expected everything with this somewhat straight forward surgery went fine. We're back home now and just looking back on the past 24 hours reminds us of all the complications that we have to be a constant look out for. Some that have very subtle signs and that can be very serious.
Funny how whenever you start to get a little comfortable that something so odd can arise so quickly and remind us not to let our guard down. It's a reminder that we're dealing with one of the most difficult to cure illnesses known, one that conventional medicine has really no answer for, just some ideas that we consider "bad".
Can't wait until Braiden is healed and we can all take a deep breath and relax and watch him jump on the school bus or drop him off at soccer practice. That time will come. Until then we know to keep giving this our best. It gets very tiring and stressful at times, but hey.......................these are the cards we were all dealt and we're playing them with the best strategy that we know. If anyone has any better ideas, let us know.
I know, I know, I know.................. Please forgive me for the lack of updates. I've been busy sitting on the couch watching TV.
Where do I start? Well, Braiden is doing great. He continues down the road to recovery and makes us love him more and more daily. Braiden is 3 1/2 years old now. We are enjoying him more than ever as we teach him, and I guess he is really teaching us too, the fundamentals of what life is REALLY all about. He is a very polite and extra loving child who occasionally brings tears to complete strangers eyes when they hear his random politness.
Braiden continues his Antineoplastin treatment from the Burzynski Clinic. He has been on the same does for some time now. If you remember, we were constantly increasing his dose levels every other day to see how far he could be "pushed" in regards to accepting the treatment. The dose level he's at (160cc. on Bag 1 / 12.5cc on bag 2) seems to be the magic numbers. Although at times he was slightly higher, the clinic agrees that this is his magic numbers. And to reiterate how this works, these bags of medicine are pumped into his port-a-cath located under the skin of his left chest via a digital pump. It runs the above doses on a cycle of every 4 hours. So, at this dose his total run time is 2 hours and 18 minutes which leaves him with the left over 1 hour and 42 minutes where he can be "free" (disconnected) to run and play without having to carry his bag of treatment. But don't be fooled, the bag doesn't and will never hold him back. He's a trooper and we have taught him that when he's running on the treatment he can still do the same things. Gosh we love him.
Braiden had a great Christmas and understand the meaning of Christmas most of all. Santa was very good to him as he more than deserved it. Amongst his favorite items are the Ludwig 5 piece drum set, the karaoke machine, the rocket (which we have yet to assemble yet) and the eisle where a tremendous amount of teaching takes place. We taught him how to spell his name already and I think Tatia is working on the days of the week right now.
Braiden has, by the grace of God, not had any major complications in a long time. That's right, no crazy police escorted trips to the ER in Boston. His bloodwork (done every other day) comes back for the most part great, and if slightly off, just a slight adjustment in his suppliments, mostly being the potassium.
We have been in south Florida pretty much since mid November due to my job. This worked out across the board as Grandma and Papa "Nano" live in Ft. Lauderdale. While I'm working out of Naples, it's only a 1.5 hour commute back and forth on the weekends mostly. I think I've made the round trip commute across alligator alley 2 dozen times and haven't gotten lost once, while surviving the alligators. If they do get in the way, I threaten them that I'll call Braiden up if they don't get out of my way. We go home very soon as my work needs me back at the RI facility.
Big news took place in early December when we won the battle against Blue Cross Blue Shield which has picked up Braiden's treatment costs reducing our balance from well over 100k to just over 3k. We thank everyone for their financial assistance towards my family's stgruggles and welcome future support as we tackle this era of our lives.
I think that's about it. Nothing critical off the top of my head worth mentioning.
In closing, I request continuing prayers for Braiden, Tatia and I but just as important, the Olsen Family in Mesa, AZ. Baby Briannah Olsen (www.babybriannah.com) was accepted through the gates of heaven to be at home with our Father at the end of January 2009. This precious 3 year old girl who was batteling the same type of brain tumor fought hard while on the same treatment as Braiden. Great success was made by all, and man had put forth 110% effort into this little angel. The Olsen Family's faith in God is some of the strongest I've ever witnessed and though this time would have appeared to have such a bad ending, the Olsens know that Briannah is in a happy place looking down upon us with her wings awaiting to see her family in the future. I have to admit I had struggled very hard with this scituation but speaking to Mark Olsen ,Briannah's father, gave me peace to know that this was not a time to be sad, but a time to rejoice. May God continue to bless this family and their supperior strength. They are a inspiration to me and should be to everyone who reads this.
Let's not forget that our temporary time here is merely a flash of light. Let's use it wisely. What can you do to put a smile on someones face today..........................Don't just think about it................
DO IT. You'lle sleep better tonight, I promise.
That's all for now.
Check back soon for pictures, alright give me a week or 2. I promise!
April 2, 2009 Update,
Braiden was admitted to Children's Hospital Boston a week ago after a blood culture came back positive with a mycobacterium infection related to but not Tuberculosis. When I asked the Infectious Disease team how I would explain the significance of this to friends and family they said "very serious" would be appropriate. This is a rare infection that they rarely see.
His portacath was removed and the surgeons noted a significant pocket of puss at the port site indicating the most likely cause of infection. He is on several strong IV antibiotics and appears to be winning the battle as up to yesterday he hadn't even one sign of being sick at all. That changed when at 3AM today he awoke to vomiting and since then has been dry heaving along with diareah. So this is a curiosity to everyone here and they are acting very cautious and taking all measures to make sure this may be a side effect of the large quantities of antibiotics that may be catching up with him or possibly a stomach bug.
It is unclear how long we will remain hospitalized but they have made it clear that we aren't going anywhere until they can positively identify this which would lead to definite treatment. A pick line is to be installed next week if all goes well. A new portacath will not be installed until they are 1000% sure this is completely gone. And obviously we are off treatment until further notice but would personally predict starting back up within 2 weeks if all goes well.
Please continue praying for Bugga. I think we all know he will pull through this as he has everything else in the past.
PS - Please take note of the new mailing address for donations to Braiden on the Fundraiser page of this site. Thank you all for your support.
After a couple of eventful (to say the least) months, everything across the board seems to be stabilizing. Most importantly Braiden, who as mentioned above had the bacteria infection starting the later part of March, is doing great. His picc line has healed up nicely and the rash and leaking encounters he ran into have diminished. He no longer needs dressing changes every other day but now on the normal frequency of once a week by a visiting nurse. Braiden will remain on 2 antibiotics most likely for a total time of six months (4 left) because the Mycobacterium Fortuitum is a tricky bacterium to test for as it is throughout the tissue in his body. Blood Cultures are typically used to find any bacteria infection, but this type may still be “lurking” even if tests come pack negative.
The overall family situation has changed dramatically since the last update due to a drastic chain of events which need not be publicly discussed. However, and most importantly, Braiden remains in great spirits and is being extremely well cared for and looked after during these times. He continues to develop normally and is clearly winning this battle.
Braiden will be turning 4 in 2 months and I will see to it that my wonderful son will enjoy that special day more than any other.
Thanks to all the massive amounts of support Braiden and I continue to receive throughout the community.
Adapt and Overcome..................is the road that I will continue on.
