Cheyenne and Justin are our two youngest children and are healthy, happy, energetic children, at least they were until November of 1998.  I received a call at work from Michelle, my wife, telling me that Cheyenne, then 2 ½ years old, couldn't stand up. At first, we thought that she must have slept wrong or something but the problem continued.  We took her to her pediatrician and we were told not to worry, it was probably a normal condition that children sometimes experience.  We remained concerned because Chey had also lost feeling in her left foot.  A couple weeks later when she had a recurrence we knew something was wrong. The doctor suggested that we should see an orthopedic specialist but never in our worst fears did we anticipate what was to come. Because Cheyenne and Justin also have a condition called Neuro-Fibromatosis (NF1) we were already scheduled to see an Orthopedist and Neurologist from Cardinal Glennon Children's Hospital (St. Louis, Missouri) in January on a routine checkup.  NF1 is a neurological disorder that effects all the nerves in the body and can sometimes be associated with more serious problems.  The Neurologist saw Cheyenne and when we discussed the situation with him, we were shocked when he suggested that the problem was most likely not related to Cheyenne's legs, but with her brain.  He sent Chey for an MRA (MRI that looks at blood vessels) and an EEG. The day we learned of the results was to that point the worst day of our lives.  We were told that Cheyenne had a very rare condition (one in several million) called MoyaMoya.  The doctor also informed us that Chey had suffered two strokes that caused permanent damage to the brain tissue.  The words 'brain damage' sent my wife and I into a state of disbelief and confusion.  How could this wonderful healthy little girl have brain damage?  Through the tears in our eyes, we watched the doctor as he showed us the evidence on the MRI. The term MoyaMoya is Japanese for "Puff of Smoke" which is what the condition looks like on the MRI. The problem is that Cheyenne's blood vessels in her brain are too small to supply enough oxygen to her brain.  Her body, in an attempt to compensate is creating lots of small blood vessels that sprout throughout her brain.  Unfortunately, this only makes the condition worse.

        The doctor informed us we only had two options.  The first option is that we could treat Cheyenne with aspirin (blood thinner) and hope that she stops having strokes.  The other option is to perform brain surgery to bi-pass the Carotid arteries supplying her brain.  In no uncertain terms the doctor stressed to us that we faced a very serious and life threatening disease.  All the doctors felt that surgery was our only real hope for Cheyenne.  As hard as it was to hear this, we couldn't sit by and take the chance that she would continue to have strokes that would cause permanent damage or death so we decided to let them perform the surgery. In preparation for the surgery, Cheyenne was admitted to Cardinal Glennon Children's Hospital the following Monday for another test. This test is called a 4 Vessel Cerebral Arterialgram and involves inserting a needle into the blood vessel in her leg and running it up into her brain and injecting dye so that they could take pictures of the vessels.  The doctors needed to get a better look at the blood vessels to determine if she had one that could be used for the bi-pass surgery. Cheyenne seemed to come through this test very well but her blood pressure was too high to be allowed to go home.  The doctors couldn't find the cause of the problem so she stayed in the hospital all week undergoing many different tests: Ultrasounds, MRIs, blood tests and two nuclear medicine tests. The nuclear tests involved injecting dyes into Cheyenne's body while they scanned her abdomen.  The second nuclear test brought to light a problem that we weren't prepared to deal with.  Michelle and I watched as the monitor displayed Cheyenne's left kidney.  With obvious concern, the technician called the doctor to look at the test. We asked, "Do you see something wrong with Cheyenne's kidney?"  She said, "It's not what I see, it's what I don't see". Chey's right kidney did not appear on the screen, which indicated that it had ceased to function. That evening Cheyenne underwent another Arteriogram, this time on her kidneys. The surgeons were hoping that they would be able to operate and save the kidney before it failed completely, unfortunately the test revealed that the kidney was already totally shut down due to the blood vessel becoming occluded (closed). This came as a complete shock to us because one week earlier, her kidney appeared totally normal on an Ultrasound. The bad news continued when we were told that before they could do the brain surgery, her kidney would have to come out.  We were also told that her good kidney's blood vessel was about ½ the size that it should be.  They would have to be extremely careful not to damage this kidney.  In a matter of two weeks, our perfectly healthy daughter was struggling for her life. The doctors continued to subject Cheyenne to numerous tests to ensure that they didn't harm or overlook anything.  Everything went well with the Nephrectomy surgery but once again Cheyenne's blood pressure remained high and she spent another eight days in the Intensive Care Unit before being able to go home.

        Things seemed to be going well until a week or so later when we noticed another problem.  Cheyenne’s smile wasn’t normal, she was slurring her words and was unable to use her left hand.  The doctors sent her through another MRA and it proved our worst fears, she had suffered her third stroke.  During this stay, Cheyenne's blood pressure became a problem once again, it was now too low. The doctors kept her for another four days until it stabilized, this time without medication. Chey underwent her first of two brain surgeries three weeks later.  A Plastic Surgeon and a Neuro-Surgeon worked together to bi-pass the Carotid Artery in her brain. They prepared a good blood vessel from her scalp, cut out a two-inch diameter section of Chey's scull and attached the blood vessel to the lining of her brain.  The hope was that the blood vessel would branch out into the brain and take over for the narrowed blood vessel currently supplying her brain.  The prognosis was that about 50% of patients respond well to this surgery. Cheyenne did great and there were no complications with the surgery. The next day we were happily surprised when the doctors informed us that Cheyenne was going home.  In September of '99, Cheyenne underwent an MRA to determine if the brain surgery was successful. The surgery had work, but not as well as the doctors hoped.  They had hoped that the blood vessels would sprout deeper into the brain than they had.  The bad news continued as the doctors informed us that the Carotid Artery had deteriorated and all but ceased to function. They had hoped with the help of the new blood vessel that the Carotid Artery could maintain its flow. Unfortunately, it did not.  If Cheyenne had not had the surgery, she would have had a major stroke and been paralyzed or worse. The doctors were also now concerned about the left side of Chey's brain because it had deteriorated further as well. Cheyenne underwent the same surgery on the left side of her brain in October '99.  She did not have any problems as a result of this surgery and went home the next day.
In February '00, our 2 year old son’s, blood pressure has become a concern.  Justin was also complaining of back pain so we took him to see Cheyenne's kidney doctor.  After running an Ultra-sound, the doctors have determined that his blood vessels are showing the same problems as Cheyenne.  Justin underwent a Nuclear medicine scan to determine if his kidneys were functioning properly. Thankfully, the doctors informed us that the kidneys were both functioning properly but his left kidney was smaller than the right which indicates the vessels are narrowed and restricting the blood flow to the kidney.  

        In June '00, Cheyenne's blood pressure became high again and fluctuating greatly.  The doctors were concerned because her kidney still hadn't grown after removing the other kidney. The doctors consulted with specialists in Michigan and determined that they should perform surgery on the blood vessels feeding the kidney.  The doctors at C.S. Motts Children's Hospital in Michigan performed the surgery in August '00.  The doctors had to cut the artery to Chey's kidney, tie off the old supply and reattach the vessel to the Aorta. Cheyenne came through the surgery very well and after 12 days in the hospital, she was finally released. Unfortunately as of march 2002  her kidney has not grown.

        Not to be left out of the picture, our oldest daughter, Amanda was diagnosed with Tourrette’s Syndrome in October ‘00.  She will be watched to make sure her condition doesn’t become a problem or develop into any Obsessive Compulsive behaviors.  

        In August '01, Justin's kidney had still not grown so the doctors performed an Arteriogram to determine the extent of his problems. Six months later, Justin’s kidney has still not grown and his blood pressure has started to become a concern.  Unfortunately, Justin may require the same surgery that Cheyenne had just undergone. Once again, we place the fate of one of our babies in the hands of God and the great doctors and nurses. We continue to monitor Chey and Justin's blood pressure at home several times a day to catch the earliest signs of kidney failure and we continue to watch for signs of any additional strokes in Cheyenne.  Chey and Justin are both taking aspirin to thin their blood and on blood pressure medicine daily.  Chey still doesn’t have full use of her left hand but has progressed greatly due to the efforts of her Occupational Therapist and her remarkable spirit.  Despite all this, we remain hopeful and positive in our attitude that God and the great doctors at Cardinal Glennon will help us keep our Angels as healthy as possible. The doctors, nurses, technicians and volunteers at Cardinal Glennon are the best.  They all put forth great effort to keep Cheyenne and Justin (and us) as comfortable as possible during their ordeals.  They did their best to keep us quickly informed of all new developments.  The volunteers brought around toys for them to play with and they have a playroom full of activities to occupy their minds.  If anyone ever has a child suffering from a serious problem, Cardinal Glennon is a Godsend.

        My family and I wanted to extend our thanks to everyone that prayed for Cheyenne, Justin and our family.  Your thoughtful words and prayers have helped us through the hardest times of our lives.  We ask that you continue to keep Cheyenne and Justin in your thoughts and prayers.  Your support and compassion will never be forgotten. Thank you all once again.

Sincerely,
Paul and Michelle Teeter Amanda (10), Cheyenne (5) and Justin (4)