Treatment and Progress Updates
Jayden was seen by Dr. Gururangan at Duke on Tuesday, February 22. He
examined Jayden and his MRI sent by Brenner's, and confirmed their diagnosis of Diffuse Pontine Glioma. One thing different
he had to offer was placing Jayden in a clinical trial already in progress using a different chemotherapy drug than other
hospitals were using. The drug is called Iressa. It has been used previously to treat adults with lung
cancer. It is an oral pill Jayden would take every day, beginning with the first day of radiation. Dr. Gururangan
kept Jayden on the daily dose of the steroid, Decadron, that he began taking while at Brenner's, but reduced the dosage in
half. He scheduled Jayden to receive 6 weeks, 5 days a week, of radiation. This is a standard treatment for
these tumors. The family accepted his plan, and placed Jayden in the clinical trial under Dr. Gururangan's care.
Jayden will be an out-patient of The Brain Tumor Center at Duke. Patients are only admitted if they have severe illnesses
or complications from the treatments
Crystal quit her job to able to be with Jayden 24/7. Aunt Jessica withdrew from her college
courses to be able to help Crystal & Jayden with the treatment plans and traveling. Nana & Pawpaw will continue
to work full-time to support the family.
Crystal, Jayden & family returned home that Tuesday. They went back on Thursday
the 24th to meet with an anesthesiologist to discuss procedures just in case Jayden ever needed to be sedated for radiation. The following week, on Wednesday, March 2nd they traveled to Duke for a
second MRI. On Thursday, March 3rd they went back to have Jayden custom fitted for a mask and pillow that
would be used to keep his head immobile while receiving the radiation treatments. Without these special items,
children would have to be sedated. Once the mask and pillow were formed, a CT scan was performed to help mark the
location where the radiation beams would be directed.
Jayden's radiation treatment began on Monday, March 7th. Jayden made daily
trips to Durham, NC to receive his radiation. The procedure takes only about 10 minutes, barring any complications.
Radiation does not cause any pain, he only hears sounds. Jayden began taking his oral chemo, Iressa, and Zofran
(a nausea medication) also on this day. Crystal and family gave Jayden his Iressa, Zofran and Decadron daily at home.
The family & friends held a benefit dinner for Jayden on a Saturday night, April
2nd. It was a wonderful evening -- great food, friends, family, and Jayden had a blast! Something else interesting
happened over the weekend. Crystal was searching on the internet, and stumbled on something she never knew. The
meaning of the name Jayden is "God has heard." Awesome!
Jayden completed his radiation treatments on April 21st, and received a beautiful certificate
of completion from the Brain Tumor Center @ Duke, signed by all the staff members and Dr. G on April 28. Jayden's next
step was an MRI on Mon., May 2nd to review results from treatment. The scan had to be spaced out due to the amount of radiation
in already present in Jayden's little body. The scan will emit some radiation into Jayden's system, so they want to allow
a little time for the radiation (from the 7 weeks of treatment) to expel out of the body before more doing scans (that
will expose him to more radiation).
Jayden is now completely off the steroid, Decadron, because there is no swelling! His
appetite has decreased, and he is starting to slim down. Each day he still takes the oral chemo, Iressa, and Zofran
(nausea medication to combat the side effects of Iressa). He is busy every day, playing miniature golf, going bowling,
and spent 4 hours on Monday playing at Chuck E. Cheese Pizza. Jayden & family are looking forward to new
scans on Mon., May 2nd, and meeting with Doctor G. Please keep them in your prayers!
Jayden & family went to Duke on Mon., May 2nd. Jayden had his MRI. Dr. G met
with Crystal & family after the MRI was reviewed. Dr. G was so excited!! He had to explain to us how excited
we should be! Jayden's tumor has shrunk about 95%. Dr. G said while he had seen results like this before, it
is very, very uncommon. He also informed us that, while Jayden's radiation treatments had ended, the radiation effects
were not complete, and had about 2 more weeks to continue attacking and killing the tumor cells, meaning he expects even
more shrinkage.
Please, please, please, keep praying for Jayden! He still takes his Zofran and Iressa
(chemo) orally at home each night. He goes to his pediatrician in Greensboro for blood work each Monday (lab results sent
to Duke). He will continue monthly check-ups with Dr. G at Duke each month. He still has to have the PET scan
this week or next. The scan will tell Dr. G so much more than an MRI can. God willing, there may be nothing
there for him to see this time around!
Jayden's PET scan is scheduled for Tue., May 17 @ 8:00am. Jayden is attending Relay For
Life tonight (5/13/05) at 7:00 in Asheboro. Hopefully, he'll meet lots of interesting people and have a good time.
We'll update everyone on the PET some time next week. Pray, pray, pray . . .
Jayden had his PET scan on 5/17. Pawpaw and Nana had to take Jayden to Duke for this scan.
Crystal is pregnant and baby Jaymn is only 6 months old, so Jayden had to avoid contact with Crystal & Jaymn for
most of the day. Pawpaw and Nana took Jayden to eat, and then went fishing at Hagan-Stone Park in Guilford County after
the scan. They were able to return home around 9:00pm that night. The results of the PET would be discussed at
Jayden's next appointment on Monday, May 30. For info about this type of test, visit www.petscaninfo.com
Monday, May 30 - Crystal, Jayden, & Aunt Jessica went to Duke for the 10:00 appointment and
check-up. They met with Dr. G, and he was very encouraged with Jayden's success. He told them that everything
looked great, actually to quote him, "everything looks beautiful!" He said the PET showed no abnormal cell
growth. What does this mean? We don't know yet, and Dr. G won't say if this means there is no cancer,
no tumor, or what. He wants another PET scan and a MRI done in 4 weeks to confirm results, compare scans, etc.
Jayden's tumor may be gone, we'll have to wait and see. His next scans are scheduled for Monday, June 27,
2005. The results are usually available in 1-3 days. That gives us 4 weeks to praise and thank God, and to
pray harder than ever that He is going to perform a miracle and cure Jayden!
Thanks to everyone for your e-mails, for staying in touch, and most of all for praying! Jayden is
doing well. He is playing, laughing, and slimming down so much . . . it is such a blessing to see him, to be around
him. Don't ever forget the meaning of the name, Jayden. It means "God has heard."
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Jayden returned to Duke for his scans in June. The results were fabulous.
Dr. G said the tumor had shrunk more than 95%. Everyone was filled with joy and hope, tears and laughter
with the news. Jayden continued trips to Duke for check-ups and
scans, and to Greensboro for blood work each week.
Jayden had a wonderful summer in 2005. He lost all his weight
gained from the steroids, and was truly back to being himself again. He got a new swimming pool, and swam like a fish
all summer! He went to the NC Zoo in Asheboro. At Granny's birthday party in July, he ran and played with all
his cousins and had a mini fireworks display.
On August 2nd, 2006, Jayden welcomed a beautiful new brother, Peyton Miles Barker, into the world.
Crystal gave him the middle name "Miles" because of all the miles she had driven with Jayden while pregnant with Peyton!
Jayden is now officially the "Big Brother".
In late August, Dr. G phoned with a little bad news. He had seen
growth of the tumor on one of Jayden's scans. They went back to Duke, changed to a different chemo and performed
more MRI and PET scans. Jayden was once again placed on steroids. He was hanging in there, though, taking
it all in stride like he was 40 instead of 4! To say Jayden is a special little boy doesn't do him justice!
By December, Jayden's tumor was growing at a steady rate, and a second tumor
had appeared as well. Jayden began intrarvenous chemo with a drug called CPT11, once a week for 4 weeks.
He still had regularly scheduled MRIs.
In January 2006, Jayden's scans revealed that his original tumor was now bigger than it was when
he was first diagnosed. The family was told the cancer had also spread into areas of his brain and spine. Doctor
G asked Crystal if she was ready to stop all treatment, and she said no. Jayden hasn't had any side effects from
his chemo to date, only side effects from the steroids. Crystal nor the family were not about to give up hope, or the search
for a treatment or a cure. They never stopped praying, never lost their faith.
During January, Crystal took Jayden to the NC mountains to see the snow.
He lay on the ground and made snow angels! He also went to see the Ringling Brothers Barnum and Bailey Circus in
Greensboro.
Early February, there was a new clinical study with another drug, Avastin, being added to
the latest chemo Jayden was on (CPT11). Unfortunately, there was not an opening in this trial for Jayden. Then,
later in the month, Dr. G called and said according to Jayden's scans, etc., they needed to stop all treatment. Dr.
G called Make-A-Wish to schedule a trip for Jayden and family. He also called in Hospice to come in and assist the family-to
help with Jayden's care. Jayden was pretty much confined to a wheel chair by now, and had paralysis in the left
side of his body.
Make-a-wish scheduled a trip for Jayden to go to Disney World in Orlando, Florida. They
left on Saturday, March 11, traveling via limo to the Charlotte, NC airport. They arrived safely, and settled into their
suite at the Nickelodeon Hotel. Jayden had breakfast with Dora and Sponge Bob. On Sunday, he went to Sea World.
Jayden got a special ride on a canoe, and staff members at Sea World let him hand-feed a dolphin a bucket of fish! It
was a magical day for all!
On Monday morning, March 13 in their hotel room,
Jayden had a seizure on the bed and stopped breathing. Crystal called 9-1-1, and hotel security was there within seconds,
rescue personnel within minutes. They attempted to get Jayden breathing again, but he kept having seizures.
They transported him via ambulance to Celebration hospital in Orlando. They were able to get him breathing again
on his on, then sent him via helicopter to South Florida Hospital in Orlando. He was admitted into the pediatric ICU unit
in a coma - unawake and not responsive to normal stimulus. He stopped breathing again on Tuesday, March
14, and a breathing tube (vent) was inserted to help him breathe. Doctors performed and EEG and scans. The results
weren't good. Crystal desperately wanted to get Jayden home to NC. He remained in Orlando until the morning
of Wednesday, March 22. They finally arranged a medical flight via Medicine Air, based in Charlotte,
NC, to transport Jayden to Brenner Children's Hospital in Winston-Salem, NC. Once at Brenner's, they repeated tests
that were done in Florida - bran scans & EEG. Same results. Doctors say he's suffered severe brain damage from
the seizure, bleeding on brain, and loss of oxygen for an undetermined amount of time. They explained that he would never
recover, never wake up. Crystal did sign a DNR on Thur., 3/24, at Brenner's. He had been the vent since Tue.,
3/14. Crystal now wanted to take him home, to Asheboro, NC. So on Sunday (3/26), they put in a feeding
tube early that afternoon, then @ 4:00 pm, doctor's removed the vent while we watched and prayed. It was hard.
But Jayden continued to breathe on his on! They fed him his first food @ 5:30. He was on watch for 24 hours, did
fine, so he & Crystal were transported via ambulance on Tue., 3/27, to Asheboro, with Hospice and Home Heath already waiting
for them, and everything was set up for Jayden's care and comfort. Pawpaw Keith, Nana Margaret, and Crystal took shifts
with administering steroids, feeding, bathing, suctioning his mouth and airway as needed. Hospice was helping as well.
Thur., 3/29, Jayden began to vomit and choke. He stopped breathing. Pawpaw Keith got his airway cleaned out,
performed CPR, and got him breathing again. He was taken to Randolph Hospital in Asheboro.
Jayden's family continued praying that he be healed, either here
on earth or in heaven. He has been through so much.
Just before 4:00 pm, on Sunday, April 2nd, 2006, Jayden had another episode
of choking and then not breathing. Everything that could be done was done, but to no avail. Jayden and Jesus had
a talk. Jayden told Jesus he wanted to run and play again, to ride four-wheelers and to just have fun. He told
Jesus that most of all, his mama, Nana and Pawpaw really needed some rest. He asked Jesus if he could just come to heaven
to be healed, and Jesus told him yes, my child, it is time, a good time, to come back home.
Jayden Montgomery Buchanan - Mama's little boy, Pawpaws "tater-bug", and Nana's "baby-angel" left
this earthly home and went to be with his Lord and Savior.
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About Pontine Glioma
The brain stem consists of 3 parts - the midbrain, the pons and medulla
located deep in the posterior part of the brain. Tumors that arise along these structures are called brain stem gliomas. Most
brain stem gliomas occur in the pons ("pontine gliomas"). Jayden's tumor is called Diffuse Pontine Glioma - diffuse means
wide-spread. The pontine tumors have a poorer prognosis than the less common midbrain and medullary gliomas. Brain
stem tumors account for only 10 percent of pediatric brain tumors. The peak incidence is between ages 5 and 10.
Surgery is not an option in the pons area of the brain stem, where Jayden's tumor is. The
area is too vascular and too delicate to touch. To attempt surgery in this area, where the tumor has embedded itself,
would involve contact with the brain stem, and damage it. Most likely this would result in leaving a patient in a vegetative
state, or dead.
Children with Diffuse Pontine Glioma are currently treated with 6 weeks of radiation, combined
with some form of chemotherapy. Following the six weeks of radiation, the tumor either stops growing or shrinks periodically.
There tends to be a 3-9 month period of normalcy, when they seem to be back to normal and symptom free. Then, the
tumor starts growing again, rapidly, and symptoms become uncontrollable. Symptoms can include double vision, inability
to close eyelids, dropping one side of the face, and difficulty chewing and swallowing. Symptoms also can be weakness
in the arms or legs, and difficulty with speech and walking. Symptoms usually happen very rapidly, because the
tumor begins growing so fast at this point.
Further radiation at this point is not possible because the area of the brain stem has already
received the maximum limit of radiation it can withstand. Any more radiation at this point will cause more harm than
good - brain damage, etc.
To date, adding chemotherapy to the six weeks of radiation therapy hasn't improved survival rates
very much. This is mainly because of a "blood brain barrier" that the brain, the brain stem, and the spinal cord
have to protect themselves. Spinal fluid circulates around the spinal cord, the brain stem and the brain constantly,
and won't let medications "intrude" into their space. Doctors are hopeful this new chemo, Iressa, will be able to penetrate
and have some positive effect by shrinking or killing the tumor cells.
There are only about 150-250 new cases of Diffuse Pontine Glioma each year. The survival
rates are poor to zero. Greater than 90% of children diagnosed will succumb to the tumor in less than 18 months
of their diagnosis, the remaining less than 10%, within less than 2 years.
Much more research is needed for this type of tumor. For Jayden, WE NEED A MIRACLE.
IT CAN HAPPEN IF YOU PRAY WITH US, AND IF IT IS GOD'S WILL!
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