Team Brendon will be having a “Fun Day” to benefit the Ingle Family. Thus event will be held at Calvary Baptist Church,
5585 Burlington Road, McLeansville, N.C.

Time:11:00am-4:00pm
Lots of family activities, food, Christmas Crafts, Bake Sale, Cake Walk, 50/50 raffle and much more. We will post more details soon.

I really do appreciate all of the continued support! Volunteers are what Team Brendon is made of and Team Brendon has the BEST VOLUNTEERS in the whole world! It really is the best feeling to be able to ease the stress on a parent with a sick child even if just for a moment. If you are interested in volunteering please contact me (Amy), I promise it will be fun and you will be so glad you did!

Team Brendon has taken on the Etchison children. Their mother Amanda was involved in a terrible head on collision. Amanda and her fiance were on their way home from a beach vacation on June 22, 2007. A drunk driver hit their truck head on and took the life of Amanda’s fiance and left Amanda to fight for her life. Amanda was in the hospital for 8 weeks with 3 of those weeks in ICU. While in the hospital she underwent 15 surgeries to try to put back together her badly broken body. Amanda suffered a broke jaw, her teeth were knocked out, a broke back, her left hip was broken, her left foot had 3rd degree burns, her right wrist was broken and her right foot was broken as well. She also had injuries to her bladder, colon and intestines. So far the doctors were able to put teeth back that were found, save her burned foot by performing skin graphs, she has pins and plates in her right hand and foot, rods in her back, part of her colon had to be taken out and her bladder and intestines were repaired.

Amanda was the sole provider for her three beautiful children. Alexis, Austyn and Adiken are now Team Brendon All Stars! The responsibility for caring for the children was shared throughout Amanda’s entire family. Amanda said, ” This wreck has changed not only my life, but my parents and grandparents too! I have the best family ever! They all stood by my side every day, every step of the way and still do today! When I got moved to a regular room, there wasn’t a night that my mom wasn’t there laying in the floor sleeping by my side. There wasn’t a day that my grandparents didn’t show up for a visit, just to sit around and talk to me or just to watch me sleep. Every day that they were there, and every night that my mom was in the floor…I thank God for my family.”

Amanda’s mother and father moved Amanda and her three children into their home so they could take care of Amanda and her children. Amanda’s Dad works seven days a week - straight with no break to support the entire family. Her mother lost her job because she was denied her family Medical Leave since Amanda is over the age of 18. Amanda said, ” My parents moved me and my children into their home because I have to have their help. They went from having no one except them in their home to having 4 extra people. I went from being able to bend over and pick up my toddler to having him handed to me to hold. I can’t give Adiken a bath or help Alexis wash her hair or just do mommy things that I should be doing. I can’t cook for them right now, I can’t help them get dressed for the simple fact that it still takes my mom’s help for me to get dressed.”

Team Brendon has added this family to the All Stars to try to help them “hang on”. With Christmas coming up their situation is only going to get harder. Donations are being accepted for the Etchison Family on our web site or can be mailed to Team Brendon.

As always, we appreciate your support!

For those of you who don’t know much about what is wrong with me: I have a cancer called neuroblastoma. It is basically a solid mass tumor on my left side next to my stomach. Apparently, what caused it was when I was growing in Mommy’s tummy, while my adrenal gland was developing, some of the cells went berzerk. This made a tumor start growing. So this tumor is a common childhood cancer right along with leukemia. Since I have been diagnosed I have been put on the “best you can get” chemo study. I have the best group of doctors and nurses at Brenner’s in Baptist taking care of me. I am going to be all better soon.

I will be going to Duke hospital for a bone marrow transplant sometime in August. Mommy and I will be living down there for 1 to 2 months. And Daddy and Lexi will come stay in an apartment as much as they can. The treatment process will take about a year. So, hopefully, next year about this time I will be cancer free.

As far as right now goes, I am doing well. I have had two rounds of chemo so far. Each round takes five days with a two week break in between. I have handled it well. I haven’t really been sick. I am still playing and eating. I am even cutting more teeth, and this past week I starting pulling up and standing. So I am still achieving my milestones. I am a tough little cookie. No cancer is going to hold me back. I will kick cancer’s butt!!!!!!!!

By Tuesday morning, they were moving him to the Pediatric Intensive Care Unit at Moses Cone.  Brendon was diagnosed with Steven Johnson Syndrome (SJS).  Blisters were starting to cover his body and his skin was peeling.  They were finally able to start an IV to get fluids to him and to get IVIG, which is the only medication known to possibly help SJS/TENS.  By Wednesday, his body was almost fully covered with blisters and peeling skin - he now had a more severe and rare form of SJS known as Toxic Epiderman Necrolysis Syndrome (TENS).  He had 2nd degree burns over 95% of his body.  We were having to put gloves on, coat them with vasoline in order to pick him up because his skin was just falling off when you picked him up.  He was starting to be in a lot of pain so they begin giving him morphine to help keep him comfortable.  He was having trouble breathing so they gave him blow-by oxygen.  Thursday, doctors and nurses spent 3 hours 15 minutes trying to get a PIC line in.  They got a single line in; however, it was removed the next day.  That afternoon, his dermatologist came to see him.  His immediate response was, “He needs to be in Chapel Hill.”  Brendon’s breathing was getting bad b/c his airway was swelling.  The following day Brendon was transported via Care Link ambulance to Chapel Hill.  When he arrived, the doctors were surprised to see just how bad he looked.  Within 45 minutes of arrival, Brendon had a breathing tube, feeding tube, was wrapped from below his face to his toes with a wrap used on burn patients and was in an induced coma.  He had 10 IV’s running into a central line in his leg.  All the doctors would say is, “He is very, very sick.”  He would spend the next 6 weeks in Pediatric Intensive Care.  While in there, he received 8 adult units of blood.  The first week in the hospital, doctors decided it would be best to give Brendon a tracheotomy as they felt it would be needed for a while and there are risk involved with leaving a breathing tube in since his airway was involved with SJS.  Most of the 6 weeks were spent very heavily sedated and unaware of his surroundings.  After 6 weeks, we moved to the Burn Unit Intensive Care.  About 2 weeks after going into the Burn Unit, Brendon was able to get a smaller trach and learned to talk around it.  After about 1 1/2 weeks, he got his trach removed.  He was restricted to thick liquids due to having problems swallowing.  He passed his swallow test about 1 week after we got home from the hospital.

Brendon was released from Chapel Hill on May 28, 2007, after spending 77 days in the hospital.  The first several weeks home were very rough.  We spent another night in Chapel Hill the following week when Brendon had to have surgery on 3 of his fingers that were infected.  He lost all of his fingernails and toenails during his illness and we thought the infections were due to ingrown fingernails.  To this date, he only has 2 fingernails; he may not get the others back.  On June 28th we were told that Brendon had lost the vision in his left eye and the doctors were unsure what would happen to the right eye.  We were told about a Dr. in Miami but not given very much encouragement to go see him.  I contacted the Dr. in Miami (Dr. Tseng) and he got us into his office the following Monday.  He is one of two doctors in the US that specialize in treatment for these patients.  He began steroid injections into the eyes to stop the inflammation that was “out of control.”  We went to Miami every 2 weeks for 6 weeks.  We saw HUGE improvements during this time.  Brendon became much more playful and was not hiding his eyes as much from the light.  He still wears his hat and sunglasses a lot, but does not depend on them all the time.  His right cornea is clear and his left is much more clear so he does have some vision in that eye; however, he has not opened them yet.  The upper eyelids are attached to the eyeball so he will have to undergo reconstructive surgery in both eyes.  We are currently waiting for the swelling and inflammation to be gone and the eyes to be calm before surgery can take place.

The first of August he had to be taken to Chapel Hill and put to sleep to have a boil drained over his right eye.  His oil glands are easily clogged now so he may continue to have problems with stys and boils.  He was placed on medication after having the boil drained because he tested positive for a staph infection.

Brendon was placed on a very low dose of oral chemotherapy on September 6, 2007, to help the inflammation in his eyes.  We are praying that he will only have to be on this medication for a very short period of time before he’s ready for eye surgery.

Once Dr. Aquavella saw his eyes, they decided that the damage to the right cornea was too severe to repair so they ended up replacing the cornea in the right eye completely on Monday. What we thought was going to be a 1 to 1.5 hour procedure turned into a 5+ hour procedure on Monday. Needless to say, Brendon was very sleepy and sick on his stomach all day Monday from being put to sleep for so long. He was finally able to keep down liquids around lunchtime on Tuesday.

The damage to the cornea in the right eye was caused by the fact that the contact would not stay in the eye. His eyelashes turn in and rub the cornea. Also, his eyes are very dry now too so that doesn’t help either. Dr. Aquavella was very pleased with the backs of both eyes (they both looked good and no signs of glaucoma, etc…). He also said that the left eye looked very good and no repair was needed to that eye (the eyelashes on this eye do not turn in and cause damage). They just cleaned it (they use baby shampoo to clean the artificial corneas) and put a very large contact lens in, which we hope will stay for a very long time. J They did get a contact lens in the right eye too. We are hoping it will stay long enough for us to get to Duke Eye Center to be fitted for a special lens that helps patients that have dry eyes. Dr. Aquavella referred us to a doctor at Duke that can work with Brendon going forward. This should reduce the number of trips we have to make to New York (YEAH!!!). This doctor will fit him for contacts, begin working with him on amblyopia (lazy eye) and hopefully be able to get him a prescription for his glasses that will help his vision.

Overall, Brendon is doing very well. His vision does seem to be improving – slowly but surely. He can get around on his own without running into objects (for the most part) and can even point out shapes in a book and tell you how many fingers you are holding up most of the time. It appears that he sees outlines of objects, but cannot see detail. He is doing well in Kindergarten and enjoys learning. He is being taught Braille now; however, we have high hopes that within the next year or two, Braille will be something he knows but not something he relies on to read.

Thanks for your continued thoughts and prayers!!

Kelly